July 15, 2013
As I started to write this next blog I was overrun by my 16 year old daughter who was in cahoots with my husband as they made fun of me for using that classic song "That's What Friends Are For." Left to my own devices they feared this blog would be the cheesiest of them all..and without giving them too much credit let's face it now that you've read my writing we all know they are probably right!
Data show that friends are what makes our world go round, especially for women. Female relationships often rank right up there with family and spousal relationships in order of importance in categories of trust and emotional intimacy. HIV positive women are no different. The blood in our veins doesn't bleed any different color. Our needs are no different than any other woman for emotional intimacy and in fact the need to connect is probably augmented and magnified due to the stress , perplexities and uncertainties of this chronic, highly stigmatized disease.
Looking back on my own life, I've always been lucky or so I thought to have at least one really good friend at a time in my life. From elementary school on, I had one close or best friend as a confidant, soul sister, cheerleader, emotional compass and overall good time buddy. Sometimes through the years, life absolutely got in the way of that friendship and things took a turn into friendship slumber-land where all well intentioned friendships go to peacefully rest while life marches on by!
In most cases the causes of such friendship gaps were benign; people moved away, changing schools made us grow distant, marriages, childbirth and job transitions created big holes in our connections. I always kind of weathered the storm really easily because it was an unspoken rule that we still always would care for one another and simply find a way to stay in touch. That rule has been broken now so many times over by me especially because I am not a good person when it comes to keeping in touch. Luckily the beauty of modern technology -- email, LinkedIn and Facebook etc. -- has helped shoddy letter writers like me begin to repair some of those lost connections.
At the end of the day, in the bottom of my heart, I know my friends, even those from elementary school, know that I still care and together they hold for me the deepest and most fond memories that due to my disease progression (memory loss especially) I am unable to hold for myself. To me all of them personify the lyrics in that golden song even with my 16 year old poking fun at me!
For many women though, myself included, mixing friends in while dealing with an HIV diagnosis however is definitely a little trickier. Women are expected to take care of their families, partners and children first and often times that leaves very little room for self care and even self love. So encouraging support in HIV circles with other women and encouraging emotional intimacy while being public or even just dealing with one's diagnosis can actually turn out be a very isolating and lonely thing. Mental health providers such as individual counselors or moderated support groups can help meet those needs for women but the women have to find the motivation and self love to be able to attend and be open to the support offered.
For me this process is one that I flaked out on over the years so many times that I've lost count. I've had great counselors and some crappy ones. I've had great support groups and I've had ones where no matter how I tried I just couldn't build a connection with my peers. In all cases I can confidently admit now that it was my baggage that was in the way because I wasn't really ready to be open to this form of support. I was never someone who had lots of friends and a busy social calendar. I was never someone who had a Rolodex full of numbers to call and plans every weekend. So you'd think that structured support would be right up my alley but truthfully I wasn't really ready to receive what was being offered and the more it was shoved down my throat (my perception of course!), the more I closed off my heart and my mind to its value.
Some PWAS really do find their friends and support in wonderful female oriented support groups within the HIV community. They exist on many local, regional and even national levels even though today in 2013 many have lost funding or resources so local services like the ones in my area may be impacted. In the ones that are still operational, there are opportunities for advocacy, education, spiritual growth, fun activities, alternative healing strategies etc.
In my early days I met my needs through a local support group in Lancaster, PA. A friend came to me through that support group and became my best friend in the HIV world - a gay male who has been infected 10 years longer than me. I love Steve with all my heart. We did tons of education in the schools, churches, business, conferences etc together side by side as a great team. We shared a ton of laughs and understanding like two peas in a pod. We didn't have to ever start at the beginning because somehow we already knew the stories of each other's journey. We were comfortable in each other's skin. He babysat my children, he has taught me tolerance and acceptance and unconditional love. He has taught me how to live despite some really bleak odds that he faced along the way. We are still Facebook friends today even though we live 3000 miles apart. He also became a sense of support for my husband along the way which was so vitally important in our marriage. My husband's eyes were open to a whole new world and whole new stream of consciousness. That friendship truly was the best thing ever to come out of my HIV disease.
As the years marched on by in my own life however, not tapping into local resources for support through an AIDS service organization or joining a church group or even a peer group through my children's school etc was a mistake in hindsight, a really big mistake. As times got tough for me and my dementia diagnosis became apparent and complicated, my support system aside from my husband and children was actually really small. I had two really good friends in LA plus some more casual friends and acquaintances who I communicated with primarily online and two really good friends 3000 miles away. My closest relative was almost a three hour drive away. In the crisis that ensued, my husband and I felt like we were falling down a very big black hole, isolated, spinning and watching life pass us by and as every branch we reached out to grab for support simply broke in our hand, we had no choice but to dump our needs at the feet of the persons nearest to us and pray that they would be there for support.
My best friend, Robyn, from Virginia, flew into LA to help me. She helped to navigate doctors appointments, tests and everyday activities with my children. She tried to organize my life a bit and rally my LA friends around my care. Her support was invaluable. My aunt, Maggi, who lives nearly three hours away, gave up a week of her time to come and help us. She helped by getting us organized and functioning at our highest capacity through doctors appointments, tests and simple things like opening the lines of communications among family members. She encouraged my mom to come out and visit from the East coast for a week which she did graciously and we so appreciated her visit and her help with things.. My best friend, Simone, chipped in silly girlfriend style by buying me new girly underwear so I would feel special, clean and sexy! She helped out with my kids and my husband and was there for whatever we needed. She provided a ton of laughs and gentle encouragement which everyone appreciated. My friend Kim was always there by phone and email to listen and support me, my husband and my kids. No matter what time of day or night we needed her she was there to give advice or just listen which was so comforting because for all of us these were really dark days filled with uncertainty and fear.
However, when the crisis was over and the dust settled, I had to begin to live my life again. It's been over a year now since those dark crisis days. As the dust settled, I realized how very alone I actually was in the scheme of things. As I began to rebuild, the APLA (AIDS Project Los Angeles) sent me a home health caregiver who comes every two weeks and puts a huge smile on my face. They also send a private counselor who comes weekly and helps me to organize my thoughts and talk about anything that I need. Twice a month, my husband and I go to marriage counseling for sero-discordant couples. Most of the time I feel like we always are talking about my issues not Tony's. Overall I work pretty hard in those sessions and we do try to balance it all out. One of our recurring themes is support, relationships and yes -- friendship.
In the process of rebuilding, I needed and still do need my friends (all of them) and unfortunately my sick brain, which used to be in tip top shape, doesn't let me see or recognize boundaries, clues and subtleties really well. I struggle daily with many interpersonal issues that I used to take for granted. For instance, I used to pride myself on being a fabulous judge of character. That skill is no longer something I have to rely upon. I used to be able to navigate the highs and lows in daily living including the mild changes in friendships and boundaries along the way. I can honestly say that today those same changes set off panic attacks and high bouts of anxiety which can leave even the most diehard of my friends wondering how much more of my neediness can they tolerate. Although HIV and HIV dementia hasn't yet been the core culprit for the loss of any of my friendships, it has definitely been a strong mitigating factor.
If I had a plethora of friends to rely on or a large social group to engage me then perhaps my friendship losses wouldn't hurt so much. Trying to look toward the future and remain optimistic, I believe that we learn from our mistakes and what I learned through my disappointments and sadness was that friendships are so vitally important in our lives. To be successful and to fulfill the emotional intimacy needs, they need care, attention, honesty, tenderness and love to grow. You can't abuse them or take them for granted and you can't have a healthy friendship if the other person in the relationship is not as invested or interested or committed as you are.
So my thoughts today really do turn to ALL my friends -- those that I've lost due to my own stupid mistakes or obtrusive neediness and those I still have today and hopefully those I'll have in the future and for all of my readers -- wherever you find your friends, treasure them. Lift them up, say thank you. Cherish them. Allow them to be a part of your journey if they are so inclined but do it in steps and measures that protect your friendship. Don't railroad non HIV friends with HIV talk 24/7/365 days of the year. Non HIV friends need to breathe and find their way in the sea of information so that they can support YOU in the best way they know how.
I think I'll download that song today and play it over and over and over again until my daughter concedes that its lyrics are applicable to life, to mine, to hers, to yours and that it's ok to be a big cheeseball every now and then! That's what friends are for! Now -- who's with me?
Until Next Time ...
Read Lynda's Blog, Get Outta My Head, You Crazy Virus!