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A Friend
Written by Chloe on Tuesday, March 10, 2009
I made a friend when I was in my late teens. I wasn’t aware of it at the time. I didn’t expect to have friends.
He was a very social person; he had a lot of friends and a lot of parties at his house. He invited me to all of his parties, but it was about four years before I was psychologically able to go to one. He never gave up on me. If you’ve never had social anxiety disorder, it’s hard to explain how terrifying the idea of going to a party is. Someone might talk to you. You’d be expected to say something back.
I did consent to come and have meals with his family. He had to explain that I wasn’t going to be talking. Their house was always a safe refuge where I could go any time and be alone without any expectations from anyone.
In retrospect, at twenty one I was clearly having a major depressive episode. It wasn’t diagnosed because I couldn’t go to see a physician or a psychotherapist. People with social anxiety disorder just fall through the cracks. There is no way to ask for help. One day I was sitting alone on the couch in the living room of my friend’s house. After I’d been crying for an hour or so my friend’s sister came in and sat next to me. She was about three years younger than me and had Down’s syndrome. She told me that she knew how I felt and she put her arms around me. I kept on crying for a long time while she hugged me. Sometimes the psychotherapist will come to you without needing to be asked. Soon after that I managed to find the courage to start going to parties.
A couple of years later my friend’s older brother was diagnosed with multiple sclerosis. He was very soon in a wheelchair. My friend remarked to me that he wished he had got MS instead of his brother. It was eerily reminiscent of the kind of thoughts I was having whenever I saw someone in leg braces or a wheelchair. No, he didn’t have BIID; it was a sibling thing.
Many years later my friend got his wish, but only half of it. His brother had died within a year of diagnosis. My friend gave me a phone call, told me the news of his own MS, and asked if he could come stay with me. I said yes.
It was a strange reversal. Under my friend’s tutelage I had gone from being someone who was almost mute to a party person who loved social interactions. Now my friend didn’t want to see anybody except me. He couldn’t bear to talk to anyone else about MS, or even admit to it. He didn’t want to be around others lest they notice the symptoms. He stayed with me for months as he struggled with depression (which he had before the MS) and gradually came to terms with his situation.
My friend came to visit long and often. I was just learning to ski in the early years. He had been an expert skier since a teenager. We had three seasons of skiing together as our skiing abilities crossed, just as our social activity had crossed. At the end of the third season he looked at me as he was taking off his skis, and said "That’s the last time". I already knew it. I looked at him and nodded in acknowledgement, unable to say anything lest I burst into tears.
He still came to visit me long and often for another couple of years. We had plenty of things we liked doing together, especially talking. Then the prospect of travelling became too much for him, and we only saw each other every two years or so, when I visited him. He seemed to have become very reclusive. He never mentioned anything about all his former friends. If I asked about somebody, he would say that he hadn’t seen them in years.
A few years ago, on a visit, I was asking him about dealing with MS. His response was that after he wakes up in the morning he does the things that he can do, and he doesn’t do the things which he can’t do; and that’s no different from anybody else. I shall never forget those words.
It has now been more than two years since I’ve seen my friend. On that last visit he was having a personal assistant come see him every day to do the things he could no longer do by himself. I was glad that he had another human being there to talk to. He never married, and he gave up dating after MS. My friend told me that he could no longer imagine life without MS. It had become a part of him. He just wouldn’t be him without it. Other PWDs have told me the same thing. It’s like that for me too. I don’t know who I would be without BIID. Somebody I suppose, but not me.
I haven’t heard from him in over a year. It has been seventeen years since his diagnosis. Letters, e-mails, etc go unanswered. It may be too late; but there’s something I want to tell him… I want to tell him about my BIID. He deserves to know. He rescued me when I was at a very low point of my life. I don’t need to hide the truth from him.
This post was hard for me to write through the tears.
I miss my friend.
Tags: BIID, Depression, Leg Braces, Multiple Sclerosis, Social Anxiety Disorder, Wheelchair
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16 Comments
That is indeed a sticky question, Will, but not offensive. And the answer is: no I’m not really sure I wanna tell him.
It all seems very complicated. There are categories of people I find easier to tell, and those I find harder to tell. It is easy for me to tell people who have gender issues (transgendered and/or intersex), because they usually seem to understand right away. It is hard for me to tell friends with disabilities. So far, the only PWDs I have told have been those who also have gender issues. Hasn’t been a problem; they get it. Crossing the bridge of telling a friend with a disability, who does not have a gender issue, is going to be tough for me.
And absolutely; is it for me or is it for them? In this case part of it is that I felt so honored to be the only friend with whom he could talk about MS. Am I not honoring him by being likewise forthcoming about something difficult? Or am I being selfish? I don’t know. Good question.
3 On 10 March, 2009, Sophie said:
It is a tough decision but I personally wouldn’t place that sort of a burden on someone’s shoulders when they already have one hell of a burden to bear already. He’s already seen his brother die and now he has the same thing.
Chloe, you’re an absolute star. I’ve been out for most of the night, and have been sweating buckets over this, so had to leave early to get back to the computer just to clarify something.
I wasn’t trying to be critical or judgemental in any way. And i wasn’t trying to corner you and shine a light in you eyes. The simple fact is, the “telling folk about biid stuff” has come up a lot over the last few days, and i simply don’t understand it. I don’t understand the mindset or motivation behind it. I’ve only ever told a handful of very very close friends in my time, and each one has ended up a complete and utter disaster, and as a result I don’t have contact with any of them these days. So all my personal experiences have been very negative, and i guess that’s always gonna be at the forefront of my mind, even when others say they’re gonna tell their pals, i just get, kinda worried, yunno. So i only wanted to know some of the hows, whys, and wherefores surrounding this thorny question of telling people.
If i’m gonna be honest, i shouldn’t have asked the question in the first place, i was most likely out of order. And i wanna apologise if it’s put you in an awkward spot.
Thanks for being so kind and mature with your reply, and thanks for not kicking me in the nuts, which i probably deserve :)
That is a good point, Sophie. I *am* listening to people’s opinions on this.
I really have to jump onto Will’s bandwagon on this topic. Not that I have ever nor do I desire to tell friends about BIID, but after nearly 30 years of dealing with the public on a retail level and having hired and fired dozens of employees, I simply have no faith in my fellow man. About 95 percent of the people I have encountered are childish, immature, grossly uneducated, spiteful, self serving and just plain stupid. (and those are the ones I know through church!!!!). People naturally take the path of least resistance in every endeavor, including their own lives. They simply want to be placated, and live in a world where perception is reality, period. The best I could hope for would be that somebody after hearing about BIID and this website would be that we are stealing the identities of disabled people over the internet!!
Colour me synical, maybe my experiences are unique, maybe I have only been exposed to the 1% of the population that behaves this way, but I must rely on the lessons experience has taught me.
@Will. I have told more than fifty people about my BIID. By far the most common response is that they will continue to love and support me. At least half a dozen have expressed that they were not particularly surprised. People have been concerned about my well being and wonder how I can contemplate giving up hiking. etc. However, only two people have indicated that they think I am somehow “wrong” to be this way. The odds are looking very good to me.
I have several motivations in telling my friends: I am more comfortable with people if I feel I have nothing to hide. I dislike being dishonest. One of my greatest pleasures in life is deep and open conversations with my friends. If you show the vulnerability to reveal your scary stuff to people, they will often return the favor because you have made them feel safe. I truly appreciate having long time friends who I can talk to about BIID without any self censorship.
I’m never going to be offended by a question, Will. There is nothing to apologise about. Thank you for helping me think this through.
@Ronald. I am well aware that I am very socially naive. It never crosses my mind that people may have ulterior motives about things. I just assume that everybody is nice until proven otherwise.
Sure, my lack of social intelligence has caused me to get hurt on occasion; but I’m a tough chick.
@Ronald, I’m truly sorry you haven’t had more luck in meeting people than you seem to have. For my own part while I’ve certainly met people such as you describe, I’ve found them to be a distinct minority.
Chloe: That’s really great, being in with a group of people that can accept this. All the more power to you and your friends.
@Ronald and Chloe, Yes to both of you. I’ve seen, experienced and lived on both sides of this coin, and can tell you you’re both right.
I was gonna go into detail, but, i’m kinda all worded out right now (Yeh, they all cry)So maybe another time :)
Thank you for sharing your heart-felt story about your friend. :) I like the fact that you were able to enjoy your friend’s MS in good and bad times. Many people who call themselves “friends” will walk away when an illness gets past the “comfort zone” point. I hope your friends lets you know how he is.
My friend with MS and myself share one mutual friend. That mutual friend and I have both been persistently trying to make contact without success. I’m not giving up. We are wondering if there have been some personality changes associated with the MS, as can sometimes happen. Anybody out there with experience of this?
It finally happened today! I heard back from my friend. I’m not sure what was in my latest e-mail that prompted him to respond this time. Reading between the lines I have the impression he considers his own life to be too lonely and boring possibly to be of interest to others. I shall work on that. The only substantive news is that he now has an assistance dog.
I am experiencing a great sense of relief. Not knowing anything had been a continuous burden. Now I have a mission. I have to convince him that somebody cares, and is interested in his life no matter how mundane it may seem to himself.
Today has been very emotional. Apparently I have been able to write just the right things to facilitate my friend opening up. It is clear that depression and MS are taking a huge toll. Writing this suddenly became very hard…
There is something I have to do. He will know … Sorry… tears streaming down face.
It will be my honor to let him know that he is loved as he faces death. As some of you suggested, it would be entirely inappropriate, and selfish of me, to say anything about BIID. It is my place to help him emotionally at journey’s end. That is all.
I probably won’t write any more on this topic.
It is my friend’s birthday today. We have been exchanging e-mails. His physical and mental condition continue to decline.
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1 On 10 March, 2009, Will said:
That’s a really touching story there Chloe. You should definitely do all you can to find out where he is and go see him.
Early last week i found out a friend of mine had died of a terminal illness a few months back. Although i hadn’t seen her for a few years, and we didn’t exactly part on the best of terms, it still would have been nice to pay a visit while she was in hospital. Not to go over old wounds and make sure she knew she was in the wrong, but to only say, goodbye. But, no one told me she was sick, no one even told me about the funeral. So i never got the chance…Cest la vie…
However, there is one thing i’d like to ask with regards to you visiting your pal, but, it’s a bit of a sticky question, and i don’t wanna offend you, so i don’t really wanna ask. But, are you really really sure you wanna tell him about the biid ?…and here comes the sticky part; would you be telling him for his sake, or yours ? Sorry, sorry, please don’t get mad at me, i just had to ask.
Obviously you know him and i don’t. But, from an outsiders point of view it did make me wonder why you would want to tell him now (although i can fully understand why you would want to)….
Argh, ignore me girl, you go for it [thumbs up]!