October 14, 2012
Michael Storm is a Latino immigrant who moved to the U.S. when he was only 8 years old. The youngest of seven kids, and with an older HIV-positive brother, he did not always feel he had the strongest support system. Though he struggled with chronic depression, he chose to ignore his mental health -- which led to an eventual mental breakdown shortly after his diagnosis in 2007.
Michael had to realize on his own the importance of mental health, starting with seeing a therapist, and then eventually attending a weekly support group which he still attends to this day. In this edition of This Positive Life, Michael guides us all through his journey and reminds us that health -- mental and physical -- is a delicate dance, and that you must, first and foremost, self-care if you plan to live a healthy life.
So let's start from the beginning. When did you know that you were HIV positive?
I was diagnosed in 2007, July 2007.
And did you think you were at risk?
Yes. Yes I did.
So, when you got the results, what was your reaction?
It was still a shock. You know, I'm sure it always is. I don't think there's ever any time that someone is given news like that and takes it lightly.
And where were you diagnosed? Was it in Illinois?
Here in Illinois. I tested regularly and, incredibly enough, I was actually able to pinpoint who infected me. That's how frequently I tested.
So, were you mad at yourself?
Mmm hmm. Yes. I have to say I was. I don't know if I should preclude this. I have a history of depression, which I was not dealing with at the time. And I think the depression helped in this bad behavior, this "self-destructive behavior," as I like to refer to it. And so that's something that I knew that was happening but I didn't choose to address.
Why didn't you choose to address the mental health stuff that was going on with you?
I knew it was self-destructive. I just didn't see it as a priority. I had school, I was in graduate school. I was graduating, I was looking forward to my new career. Everything else was more important than my mental health. In retrospect, if I had just taken the time, I don't think I would be positive today.
Well, you know, that's not rare. A lot of people have so much going on in their lives that the mental health stuff always kind of takes a backseat. So, once you were diagnosed, what did your linkage to care look like? Was it immediate? Did you take some time to talk to a specialist?
My doctor who I've been with for almost 20 years is an HIV specialist also. So he gave me the options -- which was the standard procedure back then, I think, for doctors to say, "Well you can start treatment now, or, given your current health, you can wait a little longer to decide." And, of course, being in the mode that I was at that point in my life, I chose to delay treatment. Because again, I had just graduated and I was pulling into my new profession. And I put my health aside just like I did my mental health.
And when was it that you started treatment?
It was about two years later, when I was actually having a breakdown. I couldn't work anymore. I couldn't function anymore. And this was a mental health breakdown. And in trying to work with my doctor for treatment for that, he also looked at my CD4 count and the viral load. And he said, "You know, I think it's time we started treatment." So that's when I said, "Well, I guess it's time to go on disability." One of the reasons I was delaying treatment, too, was that I was afraid of what the side effects of treatment would be and how they would affect my profession, my work. And so I chose not to get treatment just yet because of that, too.
So when you started treatment you were like, "I can't work anymore."
When I started treatment, it was "Okay I'm going to focus on my health. Period. I'm going to look at my mental health and try to get it better. And I'm going to look at my physical healthy and try to get it better." And I just looked at disability as being an option so that I could focus all of my attention to what was disabling me.
I want to go back to your mental health. What were some of the things that were causing you to be depressed? Was it past trauma, does depression run in your family?
I don't know about it running in my family. I'm not that close to my family. I think I was more frustrated with my family more than anything. They were a huge impact on my happiness. And, unfortunately, [laughs] it was not that they were not close. I think what I wanted to do is, I wanted too much for them that they didn't want for themselves. And that was frustrating me. So I chose to detach myself from that. And when I started to do that, and distance myself from them, that's when my mental health started improving. That and just acknowledging some things about myself with the help of my psychologist. You know, I definitely sought out help. My internal medicine doctor, my primary doctor, referred me to one of his peers and he is a good doctor and he worked with me. I was seeing him every week, once a week. And now it's like once a month. But it's taken well over two years.
Does your family know that you're positive?
And what was that like, when you told them?
Well, I don't know how it impacted them, because at that point in time is when I was having the nervous breakdown. I quit working and I was gonna go into treatment and I just pretty much walked in on the family and said, "Okay, this is the situation; I'm positive, I'm not healthy -- mentally or physically. And you know there's gonna be some changes around here starting with my income, starting with my responsibilities and you're just gonna have to deal with it, because I can't keep it from you."
And what did they say?
They were very quiet, they didn't respond too much to it. My mother said, "Well, that damn disease," because my brother who is ten years older than I am is also HIV positive. And he's been diagnosed now for ... I think it's about 15 years -- maybe longer. So, my mother was used to dealing with my brother. But I'm the youngest of seven and so she said ...
"That damn disease."
It must be devastating for her to have two children that are HIV positive.
I don't know how devastating it is, because I can't attempt to be in her shoes, but I imagine what anybody wants for their family. They want better things than ... [B]eing struck with a disease is not something that I guess anyone would want for anybody else in their family. Since all of this came about now my relationship with her is, I think, a little stronger. She seems optimistic, because she sees a positive change and she just keeps reinforcing, "Make sure you take care of yourself," "Don't work too hard," "Don't stress yourself out."
What was your childhood like? Did you grow up in Illinois, Chicago? Where are your parents from?
Sure, I was brought over here from Mexico, when I was about seven or eight years old. So before I was brought here from Mexico, I was actually growing up very out. I was gay, I knew I was gay. And I didn't care who knew it. That went for my neighbors, my nephews, my cousins, everybody. But, when I came to the United States it was kind of like a culture shock. And I went back in the closet. I still had gay feelings, but I sort of went with the flow of what the other children were doing. And, well, I grew up on the west side of Chicago in a predominantly Latino neighborhood. And that included growing into gangs and going into them and being part of the group. And stealing, drug dealing.
So how did you get out of that?
I came out of the closet.
Oh, okay. [Laughs.]
Yeah, when I came out of the closet, I actually, I was starting to deal with my sexuality more, because I was a teenager. And in starting to go out to the underground clubs and meet people, I met this older gentleman that -- we liked each other -- was gonna let me have a birthday party at his place, and I had a coming out party. So, I invited all of the gang bangers, I invited everybody from my neighborhood, new and old friends. When I was inviting them, I said, "You know, there's gonna be gay people there, there's gonna be drag queens, there's gonna be gang bangers, when you come just know your place." And you know, well the ones that came had fun, the ones that didn't come just stood in the neighborhood and gossiped, "Hey, Michael is a fag, Michael is a fag," and so I was like the local cocksucker after that. It was all right, they said it in fun. They said it in fun. I was more surprised at how comfortable the majority of the gang bangers were. My ex-partners would just look at me and laugh and say, "Hey, cocksucker, how you doing?" And I was, "Hey motherfucker, how you doing?" You know, but I wasn't scared of them, they weren't scared of me.
So you didn't have a threat of violence in your neighborhood or anything?
Oh no, I, I was too tight with the older guys, that ran things. I wasn't worried that there was going to be some type of backlash for anything. No, I wasn't threatened because I was gay. I wasn't threatened for quitting the gang and I think they were probably happy. "He doesn't wanna be with us anymore, it's good cause he's gay."
And how did your parents react to your sexuality?
I never gave them a chance, but I grew up mostly with my mother. And with my mother, I just pretty much never dealt with, never let her have a say in it, so to speak. I just pretty much came out.
Who else had you told about your status? Between being diagnosed and then kind of getting the mental health care and the treatment?
Nobody. It was something that I was dealing with all on my own. And I found that it was such a hard thing to deal with all by yourself. You know, there were so many times that I was going through some hard times professionally, and I wanted to share part of my concerns, part of the things that bothered me, that made me feel wanting to want to reach out to people. It was so, so hard. There were times that I used to just break down all by myself into tears and it was really hard.
You were lonely?
I wasn't lonely, I needed someone to share what I was going through. I think if I would have had the support group that I attend, that you and I met through, right now, I think if I would have had that, if I would have started treatment for my mental health and for my physical health earlier, I don't think I would have gone on disability. I don't think I would have had the breakdown that I did. If I would have had the support that I now created for myself.
Now I hear a lot of people say the same thing, I just wish I had, you know, went to support groups and had certain things and didn't keep it in, because really your life does get so much better when you start opening yourself up and getting the support that you need. So then let's talk about when you started going to support groups, how did you find them, how did you know? How did you know which one to choose for you?
Well, ironically enough at some point in my life, I worked for People with AIDS. When I was younger, and working with People with AIDS and living with AIDS I had friends that were HIV positive and had gone into independent living once again. And I reached out to one friend and he said, "Oh, you know, what you need to do is this, this, this. And there's this group that I used to go to that they would be able to help in accomplishing these things for yourself." So, he said, "Let me give you the phone number, they're located here," and that's how I started the first thing I did before reaching out though, was to go see a therapist. And at that point in time, though, I wouldn't have been able to, I was so far gone depression-wise that I wouldn't have been able to function with the support groups. It took me -- September, October, November, December, January, February, March, April -- eight months of therapy for me to be able to step outside of my comfort that was very limited at that time. And get the support or start the support that I needed.
So what is your treatment like on the HIV side? What are the adherence issues that you may have or you know, how do you deal with taking your meds for bipolar disorder and also HIV? Is that hard for you?
It's become a daily routine for me. I incorporate it into my morning routine of having coffee. You know, you get up, you do the "shower and shave" bit and then when I'm about to have coffee, I always make it a point to be the first thing I do with my first sip, take my medicine. As far as adherence, I find that one of the medications I take I have to take twice a day, in the morning and in the evening. The majority of the medications, the other medications, are all at once in the morning. So that's easy. The hard part is that last one at the end of the night. Because, sometimes, I forget. I go to bed, and I'll be in bed already and the medicine is only like three or four feet away, right next to my bed. And for some reason, I just won't take it sometimes, you know I'll be like "Oh, whatever." And then there are times that I kick myself in the butt, and I say "Get up, it's only three or four feet away, go and take your medicine." And so what I've learned is to dry swallow [laughs], cause I won't have anything to drink and that's usually a good excuse. "I don't have anything to drink," or, "I don't wanna go downstairs to get a glass." And so, now, it's like: get up, take it, dry swallow and forget about it. You know?
I just forgot the question I was gonna ask you. Love life, I was gonna ask you about your love life.
What has dating been like since you've been positive?
Well, dating -- I don't date. I haven't gone out on a date in a long time. I don't think about it too much, sometimes I do. I'm sort of comfortable right now where I'm at with myself. I'm happy about where I've come, but to the point I've come because of where I've been. I certainly have seen worse times in my life to date and so I'm not content, I'm actually happy. I'm in control of my health. I'm in control of my income, you know I'm working my way out of disability and back in the work force. That's very important to me, because I've always been independent. And then to have that not work for you for a while, you know it's something to be happy about. And I found that I have these two incredible pets that they're just so loving and I like that. I like that relationship I have with them and while I know it doesn't replace a person, it certainly helps. It makes me okay with not being with someone. Beforehand, I was a relationship oriented person. I was most of my life in monogamous relationships, long term monogamous relationships. And I'm grateful to have had them; a few of them have passed away from AIDS already. But I'm grateful to have had them and at the very least you can look back and say well it's better to have loved than never loved at all. And so that's kind of where I'm at right now.
Do you see yourself in the future being open to love? Open to dating?
Oh yeah, sure, sure. I am, always. It's just that it's not a priority and again, I'm grateful to have already experienced and I guess I look at younger people and what they're going through and what I've been through that, and say yeah I remember that, that was fun, that was interesting. Now, I think I would have to, it's so different. It's a different world. You know, and in looking at who could possibly be a match for me, well they have to be open to being HIV positive or be HIV positive themselves. I have some standards that I go by, like health is important, you need to take care of yourself. Looks, you know, that's not that important to me, so much as health is, and independence to some point.
I just want to talk a little bit more about the support group that you're in. Can you tell me a little bit more about it? You're still in it?
Okay. Is this the same one that you've been in the whole time?
I've attended a couple of different support groups. But the one that I'm attending right now is the one I started with, and the one that I see a stronger connection to, just because I've gotten to know some of the members of the group -- both employees and people that rely on it. And you know I'd like to think that we've established a decent relationship where we can co-mingle and get together here and there.
And how often does it meet?
It meets once a week, on Wednesday night, and the attendance is usually anywhere from 15 to 20, 25 people, depending on what's going on. The facilitators are very generous. They provide a meal to start the session. And then, as the dinner goes along, we each give our report as to what's going on in our lives, what's going on with our health during this past week that we've been out, and we all get to hear about each other and also give each other feedback, if necessary. There are rules to the support group, as far as behavior, and confidentiality and things like that, but sometimes they surprise you, like, for example, the conference that's going on here in the city today, they actually decided to have one of our support meetings that meets on Saturday as well, have it here. And it was a pleasant surprise. I just found out about it last minute.
I had to trek across the city to get here, but it's a fun surprise, because it gets me out of the house.
Mmm hmm. And so how has HIV changed you? Cause you've been diagnosed not too long ago. Do you think you ever would have sought mental health care had you not been positive?
Yes, yes because I saw, I just saw my mental health deteriorating. I could see how it was affecting everything around me. You know -- my work, my family and my friends. And I don't know that HIV has affected my life so much as the mental health part has. All I had to do really was talk about it with people. I haven't, I've been fortunate that I haven't had any health issues, physical health issues to deal with so when I started treatment, I had very little if any side effects to the treatment. I'm still on the same treatment.
And you're doing well.
Yeah, I haven't had to change. So I, in that aspect, it has not affected me, which is great, because at least it's let me concentrate on the other part. And it's let me make new friends. It's let me share perspectives. I respect other people's perspectives. It's not the same as mine, but it hasn't impacted me, I don't think, that way. HIV has impacted me more personally in my personal life -- with my friends that have been impacted by AIDS -- than it has personally in my life. So for that, I guess, I am grateful.
And so my final question is what would be your words of advice to people who are just diagnosed?
I would say reach out, definitely reach out and, if you really care about yourself, just start looking at some type of network, creating a network for yourself of support. These are things that I don't think a lot of people ever think about if they're healthy. So, it's really hard to do, especially when you're at that point that you're in need of it. But, I would say, get yourself a network of support. Reach out to your family, reach out to your friends, reach out to the community and get it established and the stronger that that network is, I think the stronger you become in being able to deal with your diagnosis.
Great, and with that, we're going to bring this interview to an end. Thank you so much.
You're very welcome.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.