I had this life once

On losing my hearing

I have this philosophy about my illness, that I’m not my illness and I’m not my body.  It keeps me sane a lot of the time.  It is easier to see it as something separate from me, an antagonist.  It is easier to not feel complicit in all this.

I started feeling that way when I lost my hearing.  I lost it in 2009, and never got it back.  I have no hearing in my left ear, some in my right ear.  The hearing in my right ear fluctuates.  I stopped seeking technological interventions when I was accused in 2011 of Munchausen’s by a specialist and referred to a psychiatrist.  The psychiatrist agreed I did not have Munchausen’s.  I never tried to get a hearing aid again. 
A few short weeks after the appointment with the psychiatrist, I was diagnosed with mast cell disease.  “We’re not sure why, but a lot of people with this disease have trouble with their hearing,” the doctor agreed kindly.  I cried when he told me.  It felt so final.  A tiny part of me had always hoped that once I was diagnosed, the treatment would give me back my hearing.  But it didn’t, and it won’t.  I am Deaf.  I will be Deaf for the rest of my life.
It is impossible to describe how it felt to lose my hearing.  It was like slowly bleeding with no way to stop it.  There was panic and anxiety.  I couldn’t focus on anything else.  And then eventually, it stopped.  I was damaged, and I moved on. 
The thing about your hearing is that you use it for everything.  I had never even noticed.  Very early on in my Deaf life, I looked both ways and stepped into the street.  A friend pulled me out of the way just before a car hit me.  I had seen the car, but because I couldn’t hear it, my brain told me it wasn’t moving.  It was a jarring realization that I used my hearing to keep me safe, and now it was gone.  The whole world felt different.  It felt alien.
Losing my hearing represents the first time in my life that I couldn’t make my body work through force of will.  In 2009, I was having joint pain, tiredness, fevers, rashes.  I had a few inaccurate diagnoses.  In spite of that, I could still make my body do whatever I wanted, even it hurt.  I could overcome the pain.  I could not will myself to hear. 
It was also the first time I had to demand accommodations.  I had to tell people to look at me when they spoke.  I had to get an earpiece to talk on the phone.  I had to request interpreters for medical appointments.  It was my introduction to self-advocating, and that has served me better in my adult life than any other quality.  I am not afraid to fight. 
I have adapted over the years to the point that I barely notice my Deafness.  I can hear on the phone if it is quiet; I sign well enough to use a video phone.  I watch the tv closed captioned, use a vibrating alarm clock and a lamp turns on in my living room when you ring my doorbell.  Learning to function as a late-deafened adult was hard but not impossible. 
In many ways, my hearing loss is hard to talk about.  It is still a wound, one that comes raw with too much touching.  The entire experience affected me and changed me in ways I could never have expected.  It was a loss I felt more acutely than anything else that has been taken from me.  It was the point of no return, after which I would never recover the health I had previously had.  My life is divided into two epochs: before and after I lost my hearing. 
But I owe a lot to my hearing loss, I think.  It forced me to learn another language, to become a part of a culture I had known nothing about.  I have made friends I would never have made otherwise.  I found out who in my life really cared about me.  It made me think differently about my health.  It made me realize that deafness was not a disability, but an attribute, a facet of who I am.  It made me realize that I could still have the same life I had before, if I wanted to work for it.
I recently went on high dose steroids to treat my mast cell disease.  It was a treatment I had been given for my hearing loss, one that worked, but was discontinued due to terrible side effects.  I woke up in the middle of the night a few months ago, and I heard a strange noise.  It was sort of a soft ticking, a sound I didn’t recognize.  I turned on the light and tried to locate the source.  I eventually realized it was the fan.  It had been so long since I had heard one that I had forgotten what it sounded like.  It was like being visited by an old friend.  My dosage decreased and this brief glimpse of my old life vanished.  The blades spun silently now. 
My life isn’t better or worse for being able to hear a fan.  It is a reminder of both my damaged body and the ways I have learned to live with it. 

Not a war

People use battle terms when they talk about disease.  “Keep fighting!” they say.  They talk about health in terms of “winning” and “losing.”  They call my life a “battle.”  War makes it easier to be merciless.  You want to win at all costs.  War turns the enemy into a faceless horde, and the consequences of your actions aren’t important.   You can scorch the earth if you know that eventually this will end and life will spring forth from the ground again.  You can imagine a future in which the scars have been consumed by nature, this history swallowed whole and invisible to a new generation.

In the beginning, I thought like that, too.  My disease was my enemy.  My medications were weapons.  In learning more about my illness, I was arming myself for the future.  Sometimes I was advancing; others, retreating.  Every day I made tactical decisions in my fight to overcome these obstacles.  I was a soldier, drafted into a conflict I didn’t want to fight, but doing it nonetheless.
But this isn’t a war.  This is my body.  It tries to kill me, but it also allows me to walk at night, balance in Crow pose, drink coffee.  It is sick, and it is damaged, but it is the only body I’ll ever have.  There is no known instance of a person with no mast cells surviving.  They heal my wounds, thin my blood and protect me from infection.  It pains me to admit it, but I need my mast cells. 
It’s harder to envision this as a war when you know you will never win.  I will never be able to kill off all my mast cells; I have to live with this faceless horde.  I can only appease them and mitigate my damage.  When you think about this every day, it begins to change you.  You might still see your body as an adversary, but you grudgingly find ways to work together.  And not often, but sometimes, you find that by doing this there are things you can do that couldn’t before.  In some ways, you can learn to play your disease to get everything out of your body that you possibly can.
My disease has caused me to accept my body.  It is scarred and misshapen and swollen, but it is still here.  Looking in the mirror is like visiting a monument to the resistance.  We’re outmatched, but we try anyway.  Sometimes it is better to work with your enemy than to fight them on principle.  There is a kind of quiet honor in that. 
Some days it is still a battle.  But most of the time, it is just my life, living in this body, trying to work with it.

The memory of pain


“It’s so hard to forget pain, but it’s even harder to remember sweetness.  We have no scar to show for happiness.  We learn so little from peace.”  -Chuck Palahniuk, Diary
I’m a medical scientist.  At a conference a few years ago, one of the doctors was recounting a phenomenon we are all familiar with – the patient who swears that their current illness is the worst they have ever had.  It’s not, though.  “They just forget how bad it is,” he surmised.  They are lucky, these normal people.  They get sick a few times a year, so infrequently that the light of their health overwhelms those dark spots. 
I’m not like that, and I don’t think I ever have been.  I’m very grateful for my good days, but when I look back over the landscape for the last few years, that’s not what stands out.  I remember the happiness and enjoyment of those days, but not the physical feeling.  It’s hard to commit the sensation of “less” or “better” to memory; it is merely a fact I can regurgitate when my doctors ask me.  It evokes nothing in me physically. 
I remember pain more than anything else.  I feel like this says something about me as a person, but it’s true.  I spend a lot of time with my pain, after all; it changes and evolves, but never really leaves.  It started in my hands and feet, arthritis that I feel as soon as I open my eyes.  Then my other joints, stiff and sore with motion, throbbing when still.  My lower back, that feels like a seam along which my body will break when I bend.  My lower abdomen, my entire GI tract that burns and twists.  The throbbing in the long bone of my thigh, the twisting in my chest.  The bright red sunburn of anaphylaxis all over my skin.  I have become skilled at cataloguing it, at knowing what is normal and what is new. 
Whether I like it or not, I have learned a lot from my pain.  It has forced me to prioritize my life, to actively pursue the things I want and to eschew what I don’t.  It has forced me to really want things, or to forget about them.  My pain makes me tired and irritable; it guarantees I only spend time with those people who are deeply important to me.  I never do anything just for the sake of doing it.  And in many ways, that is a blessing.
It used to bother me when people talked about being grateful for their illnesses.  I’m not grateful for my illness.  I would rather not have it.  But I like my life, and I like who I am, and my disease is part of the shaping forces responsible.  I am more empathetic now, more organized.  I expect less of people and am let down less.  I deal with disappointment better.  I accept that I cannot do everything I want to.  I suppose I’m grateful for those things, even if I would rather have come to these realizations by another route. 
Sometimes I’ll have a couple good days in a row and I think to myself, maybe this is when it gets better.  Maybe this is when things start steadily improving.  Maybe this is when my pain subsides and I get back the life I had where I could stay out late and drink alcohol and run a 5K and do yoga every day. 
Realistically, that’s never going to happen.  I will never be healthier than I am now; there is too much damage.  But every once in a while it feels like a possibility, and it doesn’t erase the memory of the pain, but it does soften it, just a little.

Cowardice


I had a whole life before I got sick.  I had jobs and relationships and friends.  And a temper and a bad attitude and a desire to always be right.  I was a complete person, with personality traits like everyone else. 
This hasn’t changed since I got sick, but I find that people tend to focus less on this.  They see me through the lens of my disease and they attribute all of my actions to the sickness.  It has surprising consequences.  The one that is most obvious is how strongly people in my life react when they perceive that I have been treated unfairly.  It feels more wrong to them that these things happened to me than if they happened to them.  The amount of anger they emote is sometime disproportionate to the offense, and even when they realize this, they cannot always control their response.  Feelings are complicated in that way. 
I find that they get the angriest about people who end their relationships with me.  In some ways, they feel the loss of this support as keenly as I do.  They love me.  They want to limit my suffering.
It is hard to be friends with someone who is chronically ill.  It can be time consuming and tiring.  It takes a lot of physical and emotional energy to support someone like me.  I’m sure it’s not always pleasant to drive me around after you’ve been working all day.  It’s also hard when you’re not able to get the favor paid back in kind – I am certainly in no position to come vacuum your floor, at least not anytime soon.  But more than these mundane things, being around the chronically ill reinforces our own fears about mortality, about the frailty of the human body.  It reminds us that we could all get sick and lose the things and people we care about.
We, the chronically ill, are afraid to lose the people we love because, statistically, we will.  Our partners will leave us, we will lose close friendships.  The stress of these events makes us sicker, but it is the emptiness, the guilt that we feel that is harder to cope with.  It’s hard to convince yourself that you’re not ruining everyone’s life when people you love and trust tell you that you are. 
I think a lot lately about the people who have cut ties with me.  It is sort of comforting to think that maybe it was because of my personality, because we just grew apart, but when I really dissect these situations, that is never what happened.   These people didn’t want to deal with me being sick.  Some started behaving callously, ignoring me when I was upset; others stopped returning my calls; others just outright got mad at me.  It’s easier to be mad at someone than stay with them while they deteriorate.  This isn’t for the faint of heart.
There is this recent concept in the American consciousness that you should never have to do anything that you find upsetting, that feeling anything bad is not your responsibility.  This is bullshit.  Sometimes you have to do things that are hard emotionally because they are the right thing to do.  You can’t just abandon people because it makes your life easier.  I’m not advocating total sacrifice here – self care is important.  But there is a balance to be struck in these situations, and I know there is because many in my life have done so.  The difference between them and those who leave is how important I am to them.  If I’m not worth the pain, it’s an easy choice.
You do not have to continue to be my friend because I am sick.  You do not have to continue to be my friend at all, if you don’t like me.  Someone said to me not so long ago, “I’m not a bad person because I can’t deal with your sickness.”  It doesn’t make you a bad person. 
But it does make you a bad friend, and I’m tired of pretending that’s not the case.  Be honest with yourself about your motivations.  We know when it’s about us as people and when it’s about our disease.  If you don’t want to be my friend anymore because I made out with your boyfriend and get embarrassingly drunk at your parties, that’s fine.  If you don’t want to be my friend anymore because I’m sick, that’s wrong.  This disease picked me.  It’s not a behavior or life choice that I made.  It is something that happened to me that I can’t control. 
It’s not fair to lose the people you love because you got sick.  And I’m tired of letting it happen gracefully.  The truth is that if you end your relationship with someone because of their disease, you are a coward.
I suppose things work out the way they’re supposed to, though.  Goddess knows I don’t have room for cowards in my life right now.


Purging


I was in love when I was diagnosed with systemic mast cell disease.  I was in a very stable, long term relationship with someone who rubbed my back when I threw up and commiserated with me when I slept for days.  I knew the statistics about chronic illness ending relationships but I never worried about it.  Everyone thinks their love is exceptional, and I was no different.  It didn’t even occur to me that I might end up alone.
I did.  It fell apart fast last spring, when I needed a lot of help.  It was shocking and painful.  I hadn’t expected it; I wasn’t ready for it.  I had a brand new colostomy and a broken relationship that never recovered.
This last year was the hardest of my life.  I tried hard to salvage, to find the love we had once had, but it was obvious that I was the only one who wanted that.  My disease was too much for him.  And this whole life that I had had, with its hopes and dreams for the future, eroded before my eyes until there was nothing left but old cards and pictures stored in a box.  I was alone. 
We forget sometimes that having a partner doesn’t always mean sharing the burden.  It means having help, whether or not you use it.  But you need to be able to take care of yourself.  It’s harder that way, and lonelier, but in the end, it is your own responsibility to stay alive.  There is a grim satisfaction in the fact that I am still alive, in no small part to my own force of will. 
I will never be as naïve as I was before.  I will never again think I’m exceptional in this way.  This stuff is hard.  Not everyone is cut out for it.  If I had a choice to deal with it, if the roles were reversed, knowing that I would have stayed is small consolation.  It feels like losing.  It feels like mast cell disease robbed me of something that I loved so much that I have to remind myself that the disease didn’t really do the robbing. 
This year has forced me to be tougher, work harder, be smarter about my disease and my life.  Yes, I have a lot of help.  I have an amazing support system of friends and family.  But in the middle of the night, it’s me looking for the occlusion in my IV line, taking my blood pressure, popping emergency meds and taking out my Epipens.  I am the one fighting for the things I need, organizing everything and ensuring that my needs get met.  And that’s okay.
I am the one who takes care of me.  And it’s harder, and more painful, but I never let myself down. 
I am my own last line of defense. 

The things I took for granted


I spent most of this week in the hospital.  I had anaphylaxis Sunday night at home, without an obvious trigger.  I used epi, called 911 and was transported to my hospital by ambulance.  I spent a few hours in the emergency department, received substantial doses of IV antihistamines and steroids, and was admitted.  I anaphylaxed the following day, and the day after that, despite employing serious measures to avoid it. 


This hospitalization was different.  I have reached a point in my disease where I am sick enough and complicated enough that doctors, even those who don’t know me, acknowledge that I am the authority on my health.  They no longer pretend to know more about my disease than I do; they allow me to determine what tests I need, and which are unnecessary.  They ask me questions like, “Is this a bowel obstruction?” and know that I will know the answer.  They monitor me very, very closely, but know that fretting over my wildly erratic blood pressure and pulse is likely fruitless.  They are sympathetic, but know there’s not much to be done that I’m not already doing. 
I both love and hate being inpatient at the hospital.  I hate that I am not home, that I am tethered to things even more than I am in my regular life, but I love that if something goes wrong, someone will notice.  I rest well at the hospital, in spite of the general noisiness and frequent intrusions for vital signs, exams, tests.  I am not worried about anaphylaxing in my sleep.  I am not afraid I won’t wake up.


It used to be that I had to defend the truth of my illness.  People didn’t believe me, or if they did, often didn’t believe the severity.  I looked grossly normal.  My life looked grossly normal.  What I suffered, I did alone; people knew I worked and lived a relatively active life, but never saw the nights I spent throwing up or sleeping through entire days.  It may have frustrated me, but it was also a gift.  If I was able to hide my disease, whether I wanted to or not, it meant that I was healthy enough to function.  I didn’t appreciate what this meant until now.


I am no longer mistaken for being healthy.  I never will be again.  My skin is permanently flushed, with only the intensity varying; I am swollen and squishy from steroids and edema; my abdomen is distended from poor GI motility; my PICC line winds along my arm, taped and waiting.  I take massive doses of medications and no one even bats an eye; being administered 350 mg of IV Benadryl over the course of a day (approximately equivalent to 1400 mg by mouth) isn’t even noteworthy.  If I am admitted to the hospital, my doctors come to see me themselves rather than send emissaries. 


I slept for 16 hours last night.  I didn’t wake to eat, drink or go to the bathroom.  My sister came in to check on me, unplugged and took my laptop, and generally was noisy for a few minutes at my bedside.  I didn’t even notice. More than any other thing it has taken from me, I feel the loss of time.  My days are devoured by this disease.  Everything feels urgent, because I never know when I will be able to do it again.  On the days when I wake early and can use my entire day, it feels amazing.  But there aren’t many of those any more.  The need to sleep is too overpowering. 


I require a lot of help to facilitate my life.  I used to be able to power through, even if it was hard.  That’s impossible now.  I used to be naïve about this.  I used to think that if I wanted it enough, I would be able to do something.  That’s untrue.  My will power is formidable, but it cannot enable me physically. I wish I had known that before.  I wish someone had told me that being able to clean my house, work every day, cook dinner, meant that I still had some health.  I wouldn’t have believed people who told me I would struggle so hard to independent at the age of 30.  I wish I had appreciated these things more. 


I used to participate in the 3-day for the Cure.  I walked 60 miles in three days a grand total of five times in four different cities.  I did all the training, even though I was sore and tired.  I walked in thundering rain and 100° heat, the watchful sun hovering overhead. 


I used to rock climb. I wasn’t very good at it, but I did it anyway.  I used to do yoga five days a week, exercise every night.  I had to medicate and be very careful, but I could do it. 


I used to eat whatever I wanted.  If it upset my stomach, I could still make that choice without fear of hospitalization.  I didn’t need to plan everything that went into my mouth.  I didn’t have to worry about how my body would process it and eliminate it. 


I used to be able to stay up late and still wake up for work.  I might not feel great, but I could do it.  Now I worry I won’t wake up in time, no matter how much I sleep.  I have to build redundancies into my system to achieve basic, everyday things.


I used to be able to clean my apartment.  I used to be able to go food shopping.  Now I need people to help me do either. 


I took for granted that I would always be able to do the things I loved, if I wanted them badly enough.  I took for granted that I would always be able to live the life I wanted, if I worked hard enough.  I took for granted that being smart would keep me alive. 


I used to think that I would “get better,” that I would eventually get to a place where I could function normally, even if it required medical intervention.  That’s not going to happen.  This is the best I can hope for.  I will never get better than I am now. 


I am generally a positive person.  I am not giving up.  I will be raising hell for years, if only because I have the support of friends and family.  I will be flying to Seattle this summer, even if I need to ship my medical supplies ahead of me and carry IV push meds for in-transit emergencies.  I am very grateful for opportunities like that.  But it doesn’t change how sick I am. 


I think that people need to know this.  That the sick people in their life can’t just “try harder” or “suck it up.”  That you can steel yourself mentally but eventually your body will fail you, maybe forever.  That you can’t blame yourself when you at long last need help to do everything.  That it doesn’t make you less than anyone else.  That all you can do is try to live within the confines of what your health allows, and milk that for all its worth.  That your body is broken and that’s not your fault.


That we’re all doing the best we can.  And that’s all anyone can do, really. 

On change and fighting the good fight

When I was in college, one of my friends had an eye-opening experience when she went home on winter break. 

“My parents look old,” she admitted, visibly distressed by this realization.  “Like a lot older than last summer.  I never noticed them aging before.” 
We don’t notice how dramatically things change when it’s gradual.  Her parents had never aged to her eyes because she saw them every day.  It’s the same way with chronic illness, at least for me.
In the beginning, it was just being tired, sinus congestion, allergy-type symptoms.  I slept a lot, felt sick a lot, but it didn’t really affect my life.  Then it was pills.  And more pills.  Specialists.  Endless tests, the wet heat of IV contrast dye, hundreds of tubes sloshing full of my blood.  IV push meds in emergency rooms, the burn of subcutaneous injections, the saline taste of IV infusions.  The false hope of an incorrect diagnosis.  The slinking fear that you won’t be believed when you have to explain one more time that you don’t have what you thought you had.  GI bleeds, organ damage, short term disability.  Hospitalizations, surgeries, central lines, hep locking, sterile dressings.  Anaphylaxis, more anaphylaxis.  Circular bruises on my thighs from autoinjectors.  Snuggling up with two liters of Lactated Ringer’s at bedtime.  Anyone can see that the life I have now in no way resembles the life I had when I started this. 
I always knew it was serious, even before I knew what it was.  I never underestimated this disease.  But I barely noticed how much harder it was for me to live a functional life, how many medicines I needed, how many surgical interventions were necessary, how my bathroom was stocked with first aid supplies, colostomy supplies, PICC line supplies.  I lost my frame of reference and this all feels normal.  Sometimes it feels like my life was always like this. 
I am never more aware of how sick I am than when I am in the hospital.  When I was scheduling my PICC line, the PA called me to go over my emergency protocol for shock, vascillating on whether it might be safer to place the line in the emergency room.  When the visiting nurse came to change my dressing, she was visibly frightened to touch my skin.  When I had major surgery last year, it took weeks of coordinating with several doctors to agree on how I should prep for surgery, what medications I needed for anesthesia, what the plan was for my recovery.  It is a reminder that even among medical professionals, my disease is intimidating and unpredictable.  We can only ever be so safe.
My disease has reached a point where I am so reactive that any procedure requires planning and premedication.  This is both a good and a bad thing.  It’s a bummer because I’m sicker; it’s a good thing because I get taken very seriously.  Even someone who knows nothing about mast cell disease can see that I am sick.  This is actually helpful.  It’s hard to argue the severity of disease when someone has a central line, an ostomy, and many surgical scars. 
This hospitalization has been much easier than the rest.  Every person I have come in contact with during this stay knows at least a little about mast cell disease.  The fact that they all remembered was that mast cell patients could progress very quickly to a dangerous situation.  Most of them knew some anecdotal things, like Darier’s sign and the flushing reaction.  I have gotten everything I needed in a reasonable amount of time.  They have clearly thought a lot about how my disease affects my other systems and test results.  They are aware that a nebulous explanation of why I have been so sick recently isn’t enough for someone like me.
I have had no problems except for one incident in which the floor resident insisted that I didn’t need epinephrine while I was anaphylaxing.  It was upsetting, but was straightened out.  It is frustrating and scary when things like this happen because no matter how prepared I am, I am still often at the mercy of authority figures.  And if those authority figures aren’t very, very well versed in mast cell disease, they can make decisions that can harm me.  We are our own best advocates but that matters very little if our providers don’t know our disease. 

It is getting better, if my current hospital stay is any indication.  The word is getting out.  More people have at least heard of mast cell disease, know that it can cause sudden, severe anaphylaxis, know that we react to things that most people never do and in ways that might seem strange.  No one has made me feel crazy, accused me of being drug seeking or treated me disrespectfully.  If they wanted to do something that wasn’t appropriate for mast cell patients, they called to confirm before proceeding. 

I know it doesn’t always seem like it, but every time we present for medical care, we are fighting the good fight. 

Keep fighting.

Dreams

I always wanted to travel.  From a very early age, I wanted to go everywhere, see everything, converse in other languages.  I spent hours in the library reading about faraway places, whispering phonetically written phrases in strange languages.  I never doubted I would make it everywhere I wanted to go.

I have done a fair amount of travelling and had many adventures.  I have turned a corner to see a brown bear eating cabbage in the moat of a castle, gotten lost hiking in the Norwegian wilderness and climbed ancient bell towers in Estonia.  My first overseas trip was almost ten years ago.  In the years that followed, I did a lot more travelling.  But all of these voyages were but practice for my ultimate goal – to travel around the world.
I get sentimental thinking about the trip around the world.  One day in 2007, I realized with that enough planning and saving, I could travel the world for a year.  For the next two years, I squirreled away money, took Russian classes, read reviews on hostels, memorized train schedules, priced airfares and planned and replanned the route over and over again.  I planned to leave in January 2011.
This trip was going to be my masterpiece.  I was going to start in Ecuador, then on to Peru to see Cusco, Nazca and Machu Picchu; fly out of Santiago, Chile, to Easter Island, where I would breathe in the ancient magic of the moa; from Easter Island to New Zealand by way of Tahiti; three weeks in NZ, from Te Reinga to skydiving in Christchurch; five weeks in Australia, travelling by train to see the Great Barrie Reef, Melbourne, Tasmania, Uluru, and Darwin; then north to tour southeast Asia, starting in Singapore, moving through Malaysia, Thailand, Cambodia and Vietnam; three weeks in Nepal hiking the Himalayas; Turkey, starting in Istanbul; on to Israel and Egypt to see the remnants of ancient civilizations; climbing Mt. Kilimanjaro in Tanzania; Namibia to see the Skeleton Coast; Botswana to see the Okavango Delta; and finishing in South Africa.
Of course, we all know that I didn’t travel around the world because I got sick.  In 2009, I lost a significant amount of hearing, and I spent a lot of the money I had saved for the trip on trying not to go deaf.  And from then I just got sicker and sicker, and I needed all my money for health costs, and I wasn’t physically able to travel like that anymore.  It was never going to happen.  It became a symbol of all the things I had lost to my failing health.
I used to have dreams often that I was going on an exciting trip and was either late for my flight or couldn’t find my passport.  Now I have dreams that I leave all my medication at home.   My body dictates my life, even in my sleep. 
I spend a lot of time thinking about the things that I want to do, the big things.  And no matter how many times I remind myself that I can’t travel around the world, I just want to do it anyway.  My spirit is stronger than my body.  It has hope that my logical mind suppressed years ago.  Our dreams sustain us, even if they are unlikely.  Sometimes especially if they are unlikely. 
I don’t know if I’ll ever take a trip like the one I painstakingly planned.  There are many reasons why it is improbable.  But I have to hope that I can.  I can live in a world where I have mast cell disease as long as I don’t have to live in a world where I could never travel around it. 
Life is nothing without hope.