My New Life as a 90% Normal Human Being: London

Since my move to London, I am entirely positive I have experienced every emotion one (semi) stable person could ever experience. My days have spanned from desperation, frustration and anger to overwhelming happiness to the point of tears.

Regardless of the emotions, this transition seems to be a very good move for me. Admittedly, I am overwhelmed. I am overwhelmed by anything and everything. When you go from literally laying on your back, stuck in a house by yourself for 2 years in the middle of nowhere to starting a masters program in a new country with old and new friends, semblance of a love life and everything else that comes along with it, things tend to be overwhelming. I can't deny between moments of pure bliss have been complete panic attacks and existential crises. But I think any "normal" person with my given conditions (both general and medical) would.

But, none of that matters. I am grateful. I am grateful every time I would out of my gorgeous flat and turn a corner and find myself among some gorgeous architecture or a museum I've never seen before. And I am proud of myself that I got this far. Reflecting on the last two years has not been easy. Rehashing every dark thought I had previously assumed I buried and repressed has been forced out. Turns out I'm lot less together than I thought I was. My doctors have been spectacular. Yes, doctors--all 6 of them. One for everything. Did anyone know that's not a cheap thing to do here...casually have 6 private doctors? Turns out the NHS does not cater to the chronically ill.

London is clean, quiet and (aside from not being able to ride the tube) let's me live at my pace. I don't feel hurried like I did in New York. People are generally friendly and open-minded/progressive about disability.

I feel like I also need to mention the support I've received not just from school, but specifically the people in program. My course leader suggested I share my story with a few people, so I posted my Huffington Post article within our own Facebook group. The feedback has truly humbled me. No one pities me, puts me on a pedestal, or a freak--I am just treated with respect, like a normal human being and, psychologically, that has made a big difference. No one cares (in a good way) that I am disabled- I am just part of the group. Not always feeling the need to explain and letting people just accept me the way I am has been such a relief.

Regarding my pain, there has, of course, still been flares and they never come as a good time (but then again, when is a good time?). But, now I have a handy bag of tricks for literally everything and it's not so bad. My doctors are prescribing all my meds. I am working out my injections. I have had some interviews/meetings with some MAJOR companies. I am also going a group project related to disability, so of course I will be talking about that when it's all done!

Sometimes, I can't deny that I am even astounded by how far I've come. I was just explaining to another person in my program that 2 years ago, I couldn't sit in a chair for more than 10 minutes without bursting into tears from pain. Now I am sitting in chairs for 8 hours, maybe not every day, but I'm getting there. My life has come to as close to "normal" as it can and I am just enjoying it. Of course I am still and maybe will always be somewhat in pain all the time, but now I am making it work to adapt to my schedule and not the other way around. Tomorrow is a sushi party with a few girls from my program (+Cards Against Humanity and Twister---which is made for EDS, FYI), Saturday possibly a date and Sunday is brunch with an old London-born FIT friend.

Once I get a few big projects out of the way, there will be more time to write and more to come on HuffPost. I have so many more tips and hints. I think I have enough information to right a novel at this point...(publishers, feel free to email me.)

All for now, 2:40AM.

xx, E

On Caregiving: A Note From My (Amazingly Supportive) Father

I used to be able to watch those pleas on television for money to feed the starving children in Africa and and be completely devoid of any emotion. You know those commercials, children with distended bellies, flies taking up residence in their eyes and some C-list celebrity trying to guilt you into donating “just a dollar a day.” Barely made an emotional dent. And I have to admit that I did feel just a wee bit guilty for not my lack of empathy, but not enough guilt to distract me from whatever I was watching before that damn commercial interrupted things.

But then we had kids.

Somehow the mere presence of these cuddly, screaming, adorable, sleeping depriving entities unlocked the emotions stashed in the recesses of my brain. Any TV show, movie, or commercial that depicted a child in any sort of distress induced that salty moisture in my eyes that I heretofore had hardly ever experienced.

As any parent will attest, the absolute worst is when your own child is ill or injured. The slightest fever could induce completely irrational fears of childhood leukemia. And don’t even mention the apprehension of flesh-eating bacteria that was induced anytime any sort of skin redness appeared.

Luckily, both of our children made it through the childhood and adolescence relatively physically and emotionally unscathed. Despite our best efforts, it did not appear that we caused and long-lasting damage to either of them. Our daughter graduated from the top fashion school in the country and and secured the job of her dreams in New York City. Our son was off to college as a pre-med with a high ranking GPA. While our arms were a little sore from patting ourselves on the back, we were just beginning to relish and enjoy our time.

And then it happened. February 23, 2013. Our daughter was at an ER in New York with searing pain in her neck and shoulders. Over the next several months, the pain migrated to her back, sides and hips. To make a very long story short, Erica had to quit her job and return home to live with us, exactly what a 24-year old had in mind for a career path. Rather than parties with the fashion gliterrari, she now got to experience leftover spaghetti and meatballs with parents. After months of poking and prodding, Erica was diagnosed with myofascial pain resulting from a genetic disorder, Ehler-Danlos Syndrome.

The worst was those nights when I had to witness Erica literally writhing in pain for hours. At that point, no medication or therapy offered any significant relief. This was, to me, a parent’s worst nightmare. Yes, I know her condition was not life-threatening. She is not confined to a wheelchair and her future still looks bright. These thoughts, though, provided little solace when she was coping with an undiagnosed condition over which we had little control.

As parents, Erica’s condition has provided us with some hard learned life lessons. We had to both learn how to be supportive and to cope with our collective changed circumstances. We wished we could have been more enlightened earlier in the process. In that vein, I would like to share what we learned as caregivers, with full recognition that there are exceptions to everything and what I suggest may not be applicable to all. The additional caveat is that Erica had resources that many lacked, such as generally supportive parents and good insurance. With that said, here is just a short list of what we learned.

1. The Pain is Real.

She’s not faking it. She’s not being dramatic. She’s not simply trying to get attention. She does want to get better. And, most important, it’s not all in her head.

2. Distraction Can be the Best Pain Relief

Most traditional pain medications, at best, did nothing, or at worst, had significant side effects that made Erica feel even worse. What did seem to provide some relief was just sitting with her and watching TV or looking at stupid videos on the internet. Netflix and Amazon were invaluable.

3. The Illness does not Define the Person

Erica desperately did not want to be known as the “chronic pain person.”The problem is that when dealing with a medical issue as all-encompassing as what she was experiencing, it is easy to let to her condition subsume conversation on any other topics. It dominated every interaction, including interactions between my wife and myself. We eventually learned to remind ourselves that we were the same individuals we were before the onset of Erica’s illness, with the same interests and eccentricities. The three of us made a conscious decision to talk about topics other than Erica’s affliction. My wife and I actually would agree not to talk about anything related to Erica’s condition while we went on walks or had dinners out.

4. Avoid Caregiver Fatigue

Recognize your limitations.There is no doubt that caregiving can be more than a full-time job. You can not always take a break when you would like, but you must take one when you can. Stress reduces your effectiveness as a caregiver. In addition, the unspoken truth is that stress can lead to resentment, which in turn leads to guilt. Certainly having a co-caregiver helps.Try to learn to recognize the onset of caregiver fatigue and take the necessary steps. It may be an afternoon nap or time away. Erica and I learned to recognize when my wife was bordering on stress overload. At those times we simply sent her away for the weekend. I recognize this may not be an option for everyone, but you must learn what is realistic and doable for you, And don’t feel guilty about taking a break. It will benefit everyone.

5. Nurture Your own Relationships

Caring for a child with a chronic condition can stress a relationship with a partner. When possible take time off together. As much as you feel to the contrary, you don’t have to include your child in every activity.

6. Timing is Everything

While your child is in the midst of a serious pain episode is not the time to try to resolve serious issues. It is not beneficial to discuss treatment options, simmering personal disputes, or future life choices in the midst of severe pain. When your child is suffering, her focus is not what job options she should pursue. Someone in distress does not have the desire, ability or inclination to deal with major issues. We have found that discussions on “big” issues were consistently unproductive at these times.

7. Adjust Expectations

Your child may not be able to do everything you think she should. Forcing someone to do something when they’re experiencing significant pain does not constitute good parental discipline. It merely exacerbates the pain. While there may have been times that I felt like I was being manipulated, I eventually that learned providing reasonable assistance was not synonymous with coddling. Instead, it helped Erica’s recovery and generally enabled her to take on more activity at a later time. While I am disappointed when Erica has to cancel a gym session, I realized that she is the best judge of her body. She has learned the hard way what she can do and when she can do it without adverse effects.

On Haterz

Haters; the worst kind of people.

People who don't have chronic pain obviously have experience in dealing with haters too, but to be a dick to a person with chronic pain is a special kind of asshole. You know these people--these people are committed to misunderstanding you, never giving you the benefit of the doubt, no matter how many times you try explain yourself or the situation, they are just actively a douchebag.

And while many people have been incredibly sweet and supportive, over a span of the last and a half or so, has been a time where I have heard and had been told the worst things a person probably could hear about themselves. Some of which includes that I was "taking advantage of a convenient situation", was actually fired from my job and covering it up with "medical issues", "lazy and didn't want to work anymore", a burden, "breaking the family apart", etc. You get my drift. While I try to ignore all of these things being said, some of them are unfortunately forever permeated into my brain.

My best advice is to try to ignore it all and it's hard-- especially for someone like me, who is quick to rip someone's head off (usually) at the drop of any perceived thought of being slighted. Slowly, as I dealt more continually with this bullshit, I decided stewing over shitty peoples' shitty opinions of me wasn't worth the time and effort. I had/have bigger fish to try. Ain't nobody got time for that.

"Forgive others, not because they deserve forgiveness, but because you deserve peace."

Because I am a person who is convinced that even if you're mad at someone, you are still holding a connection to them, I had decided to just conveniently forget a lot of people exist. For me, this works and is actually really helpful. If you can't trick your mind into like things like so, you'll end up very disappointed thinking everyone has the same heart you do.

But, some people, depending on situation and circumstance, are harder to try to ignore. While I usually always try to be mature and take the highroad, people like this deserve to periodically be fucked with and I have found one really great way to do this. 

Inspiration, for me, comes from everywhere, but Seinfeld is always full of good ideas. 

Around Christmas time I had seen this episode (like I had probably 10,000 times before) and a brilliant idea popped into my head. While I could never be bold/shitty enough to create my own "Human Fund", I remembered that, because of George, secretly, no one wants a donation made in their honor as a holiday present. This got me thinking. 

You could say studying at FIT, everyone who attended probably has an unofficial minor in "passive aggression". Although passive aggression is not my most preferred arsenal, it does come in handy time to time. Over the course of several years I have, independently (by several different people)  been referred to as the "evil genius mastermind from Saw".  I've never seen Saw before but I get where a comparison like that is going.  Like I said, people who truly suck deserve to be messed with.  Anyway, I digress. 

I think through foreshadowing you can sense where this is going. For Christmas, I decided give a donation to the American Chronic Pain Association to the tune of $75 in this person's "honor". This was great for several reasons: I looked like a super great person to everyone else (aww, charity--also a plus because I actually wanted to donate anyway) and it made this person continue to look like a douche. (Kills two birds with one stone.)

I wanted to write something really snarky in the card like "Thanks for being so helpful and supportive! You've really been super great through all of this!!!", but decided the gesture on its own had enough impact. Nothing passive aggressively says "fuck you" like a donation made in your honor to a charity of a person that you don't believe has any problems.  I also considered obnoxiously donating $5/week in his name, sending him cards weekly until I ran out of money. This idea ended up being too much effort for me, personally, but for all you determined people, by all means, go for it. 

My plan went off without a hitch. He was bewildered, confused and just basically completely mindfucked. In an awkward way to pretend like he appreciated the gesture made, I got a very awkward "Thaaaaank you?". Perfect.  This person will probably get donations made in his honor to ACPA every holiday for the rest of his life. 

Fin. 

Feedback And the Direction of Things to Come

Wow, guys! I am so thrilled to say what positive feedback this blog is already getting. After only sharing with a few close family and friends, in two days I already have about 300 views on my page! The support has really been overwhelming.

I've been thinking about all the potential success this blog could have and what I could really do to inspire, motivate and help people in these really crappy situations.  After speaking to a few good friends in similar medical situations over the last two days, I have come up with the idea to not only post my story and tips to help people suffering (or that are in recovery), but to post all off my friends' tips and stories as well as they see fit to send me. Almost 100% of everyone I asked was completely on board.

I think only great things could come from this. I hope these ideas will continue to help people in chronic pain find their own inner strength and peace of mind.

If anyone has any other suggestions of what they would like to see, please kindly post your ideas in the comment section. I would love to hear what you think and am open to anything...

UPDATE: 

I cannot even completely articulate how pleased I am with the feedback for this idea. Here a few responses from friends that really touched my heart.  There is really nothing like being truly understood and supported.