Thursday, 20 August 2015

Partners with PH: Perry and Susie

By Perry Mamigonian

When I was diagnosed with pulmonary hypertension at age 48, I thought my life was over. The truth is, it was a new beginning.  This is my story of how I learned I was wrong.

After my PH diagnosis I was relieved to finally know what was wrong with me, but nothing could prepare me for the changes it would cause in my life. Being middle-aged, single and unattached, the farthest thing from my mind at that point was pursuing a relationship. Even as time passed and I began adjusting to my “new normal,” a romantic relationship seemed unattainable. My PH forced me to stop working, and coupled with the financial and medical burdens I didn’t feel like much of a dateable commodity at that point. 

But my reticence began to change when I met another PH patient at a conference in Florida. Susie Alvarez and I met by chance while volunteering to work at the event.  While we were both aware of each other through our mutual work as support group leaders, we had never met in person. I was immediately struck by her intelligence (it’s always been an attractive quality to me) and when she told me that she was a 20 year long-term survivor, I instinctively reached out and hugged her. And that was it – we didn’t see each other again during the conference. I don’t know why I didn’t pursue her then, but I’m pretty sure my subconscious still branded myself as “undateable.”

Several months later we were both selected by PHA to participate in a leaders’ training conference in Silver Spring, MD, where we got the chance to spend quality time together.  One night a group of leaders went out to dinner and afterwards Susie and I took a long walk together through the city. We shared our feelings about living with PH, being support group leaders and life in general. Susie’s experience as a long-term survivor had given her incredible empathy, wisdom and humility, and I began to rapidly develop admiration for her.  And while I still lacked the confidence to pursue a relationship, I was satisfied just to be her friend (I should point out that while Susie and I both live in California, we are 200 miles apart, so the long-distance factor didn’t help, either).

Over the next year we began seeing each other at PH events throughout the state, increasingly enjoying our time together. While I was slowly becoming aware of my feelings for her, our distance apart and my lack of confidence still left me satisfied with just being her “friend.” I didn’t think another “PH’er” could even accept me.

As I suppose all modern relationships evolve, we began communicating more often through our electronic devices.  Emails, texts and cell phone calls dominated our contact when we were apart, and would soon lead to an innocent quip that would reveal my feelings for her.

Several weeks earlier I had given Susie some spicy peppers grown in my garden. One night I received a text from her remarking how good they tasted in her homemade soup.  My reply was, “Yes, they’re sweet and hot – just like you.” Quickly I received a phone call from her asking me to explain what I meant. “Were you flirting with me?” she asked. “Yesssss,” I slowly admitted. “Perry, are you attracted to me?”  “Yessss,” I again slowly admitted. “Oh! Then why didn’t you just say so?” (Susie’s ability to cut to the point has always impressed me).  I began to explain how I felt “undateable” and that I didn’t want to risk losing our friendship if she rejected me. Susie explained to me that I was wrong, that having PH is no reason to deny ourselves the things that make life worth living. If anything, it’s a reason to embrace them even more (her wisdom is another reason I fell for her).

We’ve been together for almost two years now, and the fact that we found each other through our PH seems like a miracle to me. We kid about being each other’s caregiver, but Susie’s experience has been such a positive influence on my life.  I’m taking better care of myself because of her, and while we both know the risks we face, we also know that it’s a bigger tragedy to deny ourselves the opportunity to be in love.

Sometimes I think back when I felt “undateable” and remember how Susie showed me that I was wrong. It wasn’t PH – it was my own misperceptions and lack of confidence. So if I were to give advice to someone, I would tell them to have confidence in your positive qualities and believe in yourself. If someone rejects you because of your PH, then they’re the one with the problem, not you.  Don’t give up on hope. Life is filled with examples of people overcoming difficulties to succeed and thrive, and love is more powerful than we realize.

Contact information for Perry and Susie:

Perry Mamigonian 
Saturday, October 17, 2015 at 11:00am - 1:00pm
Railroad Park, Clovis, CA.
RSVP to donate to support group co-leader Sue Bloomquist at 559-459-7486 by Oct 10 2015

Susie Alvarez
Please reach out to me at:
Ph:  310-938-7930
PH-Greater L.A. Support Group   
Twitter: @batterygrlFacebook: Greater L.A. PH Support Group
Our support group is honored to host our inaugural California Chapter o2 Breathe Walk,Health Fair and Raffle, Sat November 7th 2015. Please visit our Walk page and consider supporting our efforts to find a cure for PH!! 

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