I Couldn’t Let It Go: Be The Match and My Mental Illness

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(Unless you are on disability or take certain medications for mental illness…)

 

Remember when I tried to give bone marrow cells and they said I was disqualified because I was on disability. I wrote about how angry I was and how I am so tired of stigma. Well, turns out…I couldn’t let it go. It’s been a few weeks, but I have been spending time thinking about shame, guilt, and accountability. So, I decided to write and mail this letter. I know that no one will read it, no one will respond, and no one will care. But I wrote it anyway. Because I care. I share it with you because I hope that you care, too.

Also, if you are not on disability, and do not take Lithium, are not diabetic, have HIV/AIDS, (and there might be a few others,) please register to be a bone marrow donor now at BeTheMatch.org. As I say in the letter below: They may take away my right to give, but at least I can help those patients who are dying by getting others to give. Patients shouldn’t suffer because of arcane policy decisions.

To Whom It May Concern:

It has taken me a few weeks to decide to write this letter. I suppose I was trying to evaluate my personal shame and the errors of your organization. However, I think it is important for you to know what happened, why it was hurtful to me and your organization, and what remedies you might consider.

My father lost his arm when I was nine years old. When I was 15 and legally able, I began to donate blood on a regular basis. When I found out I had a high platelet count, I started apheresis. In 2010, at the age of 28, I added myself to the “Be the Match” registry.

Since I was nine years old, I have suffered from depression. In 2010, when I signed up, I was working, but a mess. Just a year later, I had to quit and move back home because I was so ill. However, in the past year and a half, I have found proper medication for my illness. I have a support team of specialists and I work hard every day to make my life better. I am, for the first time since I can remember, in a strong, happy place and while I am not ready to go back to work quite yet, I am ready to start helping others.

A few weeks ago, I received an email informing me that I might possibly be a match! I went online and watched the videos. I filled out my questionnaire immediately. It should be noted that nowhere on the questionnaire did it say what medications would disqualify me, nor did it ask if I was on disability.

I decided to call the hotline to ask why you doing more PBSC now. While on the phone, the woman was polite and friendly. She suggested we review the questionnaire while I was on the phone to save time. When she asked me about my medications, I told her that two were for my depression. Well, to be specific, I unfortunately told her it was for bipolar II which very few people know of and often associate with bipolar I, which is incredibly different. In simple terms, I have depression but need different types of drugs to impact my brain chemistry. Her tone changed: “Well you can’t give if you take Lithium.” She was looking at my questionnaire, with my list of medications, but still felt the need when she heard I had a mental illness to throw out Lithium.  At this point, she became quiet and terse as we continued to review my questionnaire.

This made me incredibly nervous which made me feel the need to validate myself. I told her that I was doing really well, and the best part was, I didn’t work, so I could be there anywhere at anytime! She asked me if I was unemployed and living with my parents or if I was on disability. I told her that I had finally moved out since I was doing better, but had started to receive short-term medical disability for the past two years to help compensate until I could work.

It was at this point she informed me that because I was on disability, I was unable to give. I told her that if it had to do with liability, I would be happy to sign a document declaring I would not sue. I would also have my psychiatrist agree to monitor me or write a note attesting that I was healthy enough to deal with the side effects that I know the shots can give. It wasn’t that I was depressed, though she made it quite clear she was not happy about that. It was because I get a small amount of money from the government every year. When I signed up in 2010, if I had given, I would be more concerned about my mental state than I am now. And yet, because I was working, I would have been able to give? If I was just laying around at my parents’ house, living off of their food and money, I could even give, but because I was trying to be more independent, I was being penalized.

She told me she would “do me a favor” and not take me out of the system completely but rather declare me “invalid” until I called back and told them I was off disability. Now I know there is a stigma in society, and clearly this woman was uneducated but her actions made me feel tainted.

What has been bothering me since is that nowhere in the documents I received did it tell me that if I was on disability, I would be unable to give. You don’t even have a section on the questionnaire that says: “If you take the following medications, please call as you may be unable to give.” You have a question about diabetes – if disability is such a problem, why was it not on there?

I hope you can understand how excited I was to possibly save someone’s life. My friend died a few years ago of Hodgkin’s because she couldn’t find a donor in time. I had already written all of my family and friends telling them that while there was still a slim chance, I had actually been called up! I then had to write them and tell them that because I get government subsidies, I am useless to the program.

The thought that kept going through my head is that if I was actually a match and you told the donor I had a mental illness (that did not impact my cells) and that I was on disability, there is no doubt in my mind they would ever say no to my cells! For an organization that understands how difficult it is to find a match, something this inconsequential is letting people die.

If there are legal reasons, there should be information on the website. And I should be able to talk with someone about it. I am so disappointed in you as an organization. I wrote a blog post about this, and told my family and friends. But I want you to know that I also told them I still thought if they could, they should sign up. You may take away my right to give, but at least I can help those patients who are dying by getting others to give. Patients shouldn’t suffer because of your arcane policy decisions.

I am no longer ashamed of myself. I stand true to my values of helping others. I will continue to give blood and platelets and encourage others to sign up on the registry. But I am ashamed of your organization, and I hope by sharing this story, you are ashamed of yourselves as well. I ask you not to apologize, but to please do something about this. If you don’t want us to give, then make it clear. If there are medications we cannot take, let us know. And make sure you have educated nurses on the phone for the questionnaire who know better than to judge someone on the phone for an illness they did not ask for, who is only trying to help.

We need organizations like yours, but you need to step up. It is 2016, and people are dying who could possibly live. It is your responsibility to make sure that anyone that can give, should be able. I hope you give this time and thought. I know I have.

 

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I’m Not Who You Think I Am

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I wanted to start this blog to help humanize mental illness. So many people I speak to tell me one of the main problems with mental illness is that they know so little about it. And it’s true. Unless you are dealing with one personally; are a friend or family member who loves someone with the illness; are a psychiatrist or therapist; or study it, chances are you know about mental illness from movies, television, and occasional commercials with cartoon characters looking sad.

And stigma is a horrible plague in our society. Lack of education and therefore a preponderance of ignorance regarding mental illness exacerbates our perpetuating lack of treatment; rise in homelessness; increased self-medication through non-prescription drugs and alcohol; bullying and increased suicides; and discriminatory practices in employment and health insurance practices. (I know our government is working on the last one, but honestly as someone who just recently got jacked by the employment system, it needs a lot more help.)

So here I stand on my soap box, attempting to “put a face to a name,” trying to break barriers, and I pronounce my name to be: Ava G. But it’s not. It’s a great name, but it’s not MY name. When I decided to do this blog, I was okay with using my name. I was pretty sure I would never work, date, or really exist in society, so why worry? But then I thought, “what if?” What if I finally get my meds together long enough to handle a job and they find this blog? What if there’s someone who I’m really getting along with and we’ve made it past first base and he reads this?

Now I don’t think this blog is “going places” and the irony is I’m pretty much sharing it with people I know and who know about this part of my life. I also know the hypocrisy of my statements above: how do you break down stigma and discrimination if you will not stand up and be counted? And besides, who wants to work at an organization that won’t hire a fantastic, devoted, talented worker because they write a blog on how hard it is to maintain being that great. Who wants to go to second with a dude who knows so little, and seeing a picture of Jack Nicholson makes him want to run for the door…sober.

I have done a lot of community outreach and civil rights coalition-building in my life, and I am constantly advocating that people make their voice known. Sign a petition, call a representative, or put your name on a letter. I tell people to go out to their communities and hand out flyers, volunteer at organizations, etc. And not once do I say, “and don’t forget to use a pseudonym.” A part of me wants to say, it’s not in the name but in the action. After all, can’t we all be voices for change, without being THE voice? I’ve decided that for now, writing about these personal experiences is the best I can do.

And besides, I think Ava G. is a lovely name.

Why Are You “E.C.Teed_Off”?

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Note: Reference to suicide, suicidal ideation, and self-harm.

Hello there, and welcome to my first blog post! I promise I won’t use pictures of Jack Nicholson from One Flew Over the Cuckoo’s Nest for any other post. (But never say never, right?)

After all these years, I’ve come to see living with a mental illness as a process, not a problem. Ok, it is a problem – a really frustrating, devastating, never-ending, self-destructive problem. But I suppose what I really mean is that the solution is a process. There is no quick fix for mental illness and it cannot be cured. Believe me, I’ve tried. Like many have said before me, it’s like having Type-1 diabetes – you can help make it better, you can learn to live with it, but you will always be a diabetic. It only has taken me about 14 years to accept this, and some days I still just don’t want it to be true.

While I suppose my story of battling mental illness starts at the age of eight, I wanted to use this blog to focus on the many components of the illness: like its impact on family and friends; life-building; medication; therapy; (mis)diagnosis; stigma; and of course, ECT. And knowing me, perhaps a few other (million) things.

So the name of the blog … about five years ago, I had to quit my job on the East Coast that I was quite fond of, leave my friends and other life accoutrements, and move back to the West Coast because of a breakdown that led me trapped in a deteriorating downward spiral. I spent the next year in Berkeley, unable to leave the house; binge-watching Netflix; making and eating pancakes, and hating my life. I was about to turn 30 and realized I couldn’t take it anymore. I decided the week before I turned 30, I would kill myself.

Now the act of killing oneself might be easy (unless you are only attempting suicide as a sign for help,) but doing it while under close surveillance of family and friends who need and love you, is a bitch. Plus, I am currently and was at the time becoming the worst liar in the world. Who knew age not only led to wisdom but truth – maybe we just get too tired to lie? Anyway, I told my psychiatrist that I was having suicidal ideation and given the 10 years of drugs I had tried for my major depressive disorder, she decided now was the time I should try ECT.

Now I know what you’re thinking: ECT? Electroconvulsive Therapy? Electro Shock?! Even I thought of the scene from One Flew Over the Cuckoo’s Nest with the wood stick jammed between his teeth, his body seizing, froth spilling from the sides of his mouth, and it only making him even more fucking crazy. But to be honest, when you want to kill yourself and have a history of self-destructive behavior, why not? I figured, worse case scenario: I died on the table. Convenient. If it hurt? Good. I deserved it anyway.

The plan was to do ECT for six weeks, three times a day. That’s a good starter course. (FYI: I don’t remember much of Berkeley because of the severe depression nor do I remember most of my ECT so my details may be slightly off. Specific “facts” are known by either my doctor or my mom. I do know, however, that those six weeks turned into two years, give or take.)

The worst part of ECT, is that for the first procedure you have to stay in the psychiatric ward – just in case something happens – liability, etc. As someone who at the time had been diagnosed with major depressive disorder, I was in pretty good shape compared to my fellow “inmates.” It was the first time I had ever seen someone who was schizophrenic and off their meds, met a person with borderline personality, or witnessed severe bipolar disorder.

No matter how bad my depression ever got, I’ve always been polite, extroverted around people, and eager to please. Here I was sharing a room with three other people who didn’t give a fuck if they farted or if the nurse wanted them to be quiet. My eyes wide open, I heard someone who was in what I think they call in prison “solitary lockdown” screaming the entire night. Needless to say, that made me more scared than the idea of ECT. But then the next morning, this sweet, tall man came to wheel me to my first session. The front desk people didn’t look at me like I was a beaten puppy. The doctor was kind but upfront and incredibly educated. The nursing staff was so kind, I didn’t have to make excuses or take the energy to hide my sad truths. They asked me some pretty severe questions about my life, but never showed judgment. I already felt like I was building a family of friends who actually understood who I was. And once I was wheeled into the “operating room” they were efficient and light-hearted. (More stories on that later.)

As for the process, after they wheel you into the room, they give you fentanyl which relaxes your body and makes you feel … at peace. At the time, I didn’t know that people actually “used” fentanyl. But I certainly get why now. So we get in there, and they were all chuckling. Actually, they chuckled every time I had a session, because in my nervous honesty when they asked me about allergies, I had mentioned eggplant. I get nervous around authority figures and my luck, one of the anesthetics reacts to female eggplant. I don’t know?! I was nervous! Anyway, after that, every time I had a session, they included it among the list of allergies on the white board. And every time I had a session, they thought it was hilarious as if the first time. Well, no one can say I don’t entertain but I assure you I can do better than that.

Then I took a deep breath and the nurse who was there took my hand. I told her to make sure no one started until I was fully asleep and she promised me she wouldn’t let that happen. The warmth of her hand and the smile on her face assured me I was in good hands. I was supposed to count to ten but I don’t think I ever got past eight. (I was thinking about how in movies they always make it to like…four – which is bullshit. But then I realized, if you give someone until four, you can scan the room, the lines on the scary machine, zoom in on the anesthesiologist, the nurse wiping the doctor’s brow. It also gives you time for some dramatic music. So okay, I’ll let it slide this time.) I felt like I blinked and I was in post-op. According to the doctors, the procedure “door to door” is a total of 15 minutes. You spend more time in pre-surgery and post-op than in the actual procedure itself.

You can learn more about the details of the process and why it can be a good option at the Mayo Clinic website. Before I did the procedure, I also read “Shock” by Kitty Dukakis. What most people don’t know is that ECT is really helpful for people with bipolar I and schizophrenia, as well as major depression. Much later on, as in two years through the process, I would learn I had been misdiagnosed and did not have major depressive disorder but bipolar II. Turns out, those of us lucky to have a form of bipolar that no one knows about, while ECT is effective the first time, it’s ineffective if ever tried again. Bully for me! It sucked because at the time I thought ECT was the G-d I never had, but I found some peace in understanding why none of the meds I was taking were working. The hypomania also explained a lot of my past behavior. And most importantly, it meant I could use different medication to actually reach the right parts of my brain that were fucked up.

While I am now back to struggling with medications and the like, I have to say – I miss the “allure” of ECT. Sure, I had aches and pains afterward. But I felt my mind changing: it was like I could feel myself gaining control over my demons. I hope to share more about my experience with ECT as it varies from person to person, and more importantly because people rarely talk about it at all. Long story short, this is why I chose the name Ecteedoff for my blog.

As I wrote before, I hope to use this blog to explore the complexity of mental illness – from the minutia to larger systemic issues. And I hope you’ll join me, both on my journey and in exploring your own.