Tuesday, November 16, 2010

Sweet, painful, inspiring IRONY

IRONY. Definition: an outcome of events contrary to what was, or might have been, expected.

When I was in law school, I took part in the Civil Justice Clinic. The Clinic was a semester long and offered amazing professors to guide a small number of students in working on real cases and representing real clients, primarily from low-income communities. My case was a Disability Case. I was assigned to represent a homeless woman who had applied for Social Security Disability benefits (from the government), was denied, and who had the right to a hearing on her claim before a Social Security Administration Administrative Law Judge. I took the case from start to finish in front of the Administrative Law Judge and won!! It was the most memorable day of my law school experience. That was 2004.

It is now 2010. I expected to be a successful civil rights and human rights lawyer, championing for social justice causes and helping people that could not afford legal representation or who have been wronged in some way and who could utilize the law (and my free legal counsel) to help them rise above their circumstances. Ah...what we expect of ourselves. What we hope and dream our lives will be. Many wise adages say that our live will not turn out like we planned. Mine, as I've mentioned before in a visual I like to use, took everything I knew, threw it in a blender and vomited it up on the kitchen walls. That is what happened to my life.

Ah the sweet painful irony. Instead of being that lawyer to the poor, activist that I hoped to be, engaged or married, able to travel, snowboard, mountain bike, rock climb, and do all the other things I love so much, I have been sick with a chronic debilitating disease for 4 years, unable to work, exercise, function as a full adult for over 3 years, and paying $4,000+/monthly in medical bills for Intravenous medication to go into a semi-permanent catheter in my arm that my insurance won't cover because most of the mainstream medical community doesn't treat late-stage Lyme disease.

Instead of helping disabled clients facing Social Security disability denials (which by the way often pays a measly $900 per MONTH; how can these people afford food and clothing and shelter and medical bills with that kind of stipend?!), I am fighting for my own disability benefits. I dropped off over 3,000 pages of medical records that my parents helped photocopy at the Social Security office a few weeks ago.

NOPE, did NOT see this one coming. Did NOT plan on being disabled at 29-33, years after graduating law school. Who the hell plans on that? The ironic part is I now have been in the VERY SHOES my PAST CLIENTS have been in, literally walking into the Social Security disability office, taking a number, waiting in the lifeless stale depressing office, and fighting the system of bureaucracy just to get a small monthly stipend I paid into when I worked.

If it were not for my parents, donations to my blog, and my enormous tribe of loving, amazing, generous friends, I WOULD be homeless. I would have nowhere to go and some of these people if not most, had nowhere else to go. That CRUSHED my heart into a million little pieces.


When I went to drop off my medical records and speak to the Social Security disability office about some things the online system messed up, I was confronted by
a reality I had not seen in years, since my days volunteering with homeless clients in law school. There was a man outside who looked very poor, had 1 leg in a wheelchair, nobody to help him.

I asked him if he wanted me to open the door to the building, and he declined. I went through security and took a ticket and waited in a depressingly lit room filled with people that, without a doubt, were severely disabled, very poor, if not homeless. I looked around and felt DEEP SOUL-wrenching sadness in my heart. Me - a lawyer, having so much trouble with the bureaucratic hurdles with my application, and most of these people didn't have help filing out their applications. Many would be denied, and then they would have to find a pro bono lawyer to help them appeal their case (let me tell you these are not easy to find).

Did they know about these resources? All this for about $900 a month!? I couldn't stand to think of the hardships all these people faced, and how I wish I was not sick and was able to work again and do these cases on a pro bono basis again. Now!!

There were over 30 people there that I could have been helping. That is the ONLY REASON I WENT TO LAW SCHOOL!! But instead, I was there for myself. I couldn't take it - everywhere I looked, I saw sullen, worn faces that tugged at my heart. I started bawling. Crying hysterically. I put my sunglasses on so people wouldn't notice. I stared at the screen waiting for my number to be called and wondered HOW I GOT THERE. How did I get to the disability office for my application when I was supposed to be helping those people as an advocate? It was too much. I was also having a rough day with treatment and that didn't help.

Three years of not working and feeling helpless when my whole REASON for going to law school was to help others. I couldn't stop crying, and then the man across from me, said, "This is Toto, she is my girlfriend, she is my girlfriend because she scratches my back. This is Toto." Um, what????!! There was nobody sitting next to him, and clearly he had a mental illness. But at the time, it was too much to bear, I felt like I was in a movie and my head was spinning from the infusions and I felt like I was going to just lose it and throw myself on the floor and flail about (except eew it smelled like stale pee, sort of like the stairwell to the parking garage in law school) crying until my fairy godmother came to rescue me.

Finally, I was called into the office to discuss my case, and I had to wipe away all my tears, push all that sadness, all that grief, all that feeling of helplessness down deep into my throat, stuff it away, so I could talk to the man at the office. IT WAS AWFUL, my throat was saturated with a sadness, a glimpse of who I once was and could have been. Who I could have helped in three years instead of sitting attached to an IV pole and living in pajamas and being miserable.

I know now that I will be a better lawyer and advocate than ever before having sat in these people's shoes.

BACK To MY SOCIAL SECURITY CASE and "Gwen," my client
As I mentioned, in 2004, I was representing "Gwen" (name changed to protect confidentiality) at the Civil Justice Clinic in law school.

I wanted to do a housing or employment case (you could choose what type of case you preferred to work on at the Clinic). The Disability case wasn't my first choice but I spent many hours up until 3 am for four months going through boxes of medical records of Gwen, interviewing her, counseling her, researching, and writing a brief for the judge that would eventually win her disability benefits back. She was homeless and living in a car at that time. The benefits were only $800-900/month. How she could even live on that was questionable, but it was something. We tried to get her set up in low-income housing after we won her case but there was a waiting list. I could go on for hours describing the horrific challenges that the homeless population experience.

I don't think it was any coincidence I was assigned to represent Gwen in a Social Security Disability case 6 years ago. I am now basically advocating for myself in the same case. If I didn't have family and friends to support me financially, I TOO would be living in a car like Gwen. I am blessed and so grateful for the things I am given because someone with very little family or no resources could not survive a disease like late-stage Lyme.

Where is the inspiration in this seemingly sad story? Hmm, let me count the ways:

I have seen the world in ways I never thought possible.

I have lost all material things and physical and cognitive abilities and through regaining them slowly, have discovered a gratitude for life that has never been experienced before.

Walking through that disability office was painful, but it gave me a refresher course in WHY I am on this planet - to make a CHANGE. To help others, and that IS catalyzing my recovery. Gratitude has new meaning in my life; a 15 minute walk is an exciting feat for me nowadays. I am grateful, for though I could complain about my circumstances, I probably have it much better than many of the homeless people I saw there at the SS office. I am in a position to use my experience to help others and create change - in the Lyme world, in my field of work as a lawyer, in so many ways. I have a responsibility. To NOT take this experience and use it for good would be morally and ethically irresponsible in my eyes.

(1) Saw Dr. G last week; she did some memory tests by asking me what I had for dinner the night before and how long it takes me to remember. This time she asked me how often I am SHOWERING. I think to assess fatigue if the rounds of treatment make it too difficult to do that. I don't smell, I assure you. I do shower! Every other day, because showering with a picc line on your arm has to be wrapped thrice is not enjoyable.

(2) Was doing SO well for 2 weeks straight (with some minor hiccups) and was SO happy and then I knew I had to prepare myself mentally and physically for the pain and wrath of new treatment and what it would do to me. Saturday I laid on the couch, felt like I was drooling on my leopard print Snuggie (Thanks Ellen, makes me laugh every time I see it) watching the TV hoping food would magically make its way to the couch because I could barely get up to reheat anything. The day after, I was so nauseated I felt I was going to barf on my friend. 3 days later and 2nd day of treatment, I don't feel grand, but I can feel it working! Hallelujah!

(2) Speaking of irony, isn't that the story of my life...you know I have to say I really don't love when people say "Oh that SUCKS" what you're going through. I know it sucks. But does it? Yes, if you asked me two days ago when I started new round of IV Leva and IV Doxy together (AM & PM) everyday, I would have said this sucks. But I've been through the beginnings of new treatment rounds SO many times that I'm beginning to actually 'handle' them with a bit of poise and even KNOW that it's OK to feel like I am going to keel over and die even in the fetal position under a blanket(as described before, we know that means the meds are working) because I WILL come out from under that blanket a few days, weeks, or months later (thank GOD it's been only days and weeks recently).


  1. WOW Momo, you do it again. Poignant, elequent, and brilliantly written. What a woman you are. I just cannot always understand how this illness & journey is here for a purpose, and here you show me why.

    I love you Mona ....your a beautiful soul....

  2. I can't always understand either, Jen. But sometimes a sense of purpose peeks out from hidden corners, and sometimes it just makes sense. Not every day, just some days and you have to remember those. I love you JJ.