Eye Opener

I know I’m sick. Obviously, I know.

I know I’m sick because it changed my life. Having PH stole my ability to have more children, drains my family’s finances and emotions and forces us to live under the constant stress of my potential death. That being said however, I’ve always felt lucky. I live as close to normal a life as I can possibly hope for. I’m not on daily oxygen, I don’t have a port in my heart, I eat what I like (though I should probably be more aware), and I’m able to play an active part in almost every aspect of my life.

I may get more tired than most, have a hard time with humidity and changing barometric pressure and, because I already live under a high level of stress, have a tendency to freak out more than necessary when things go awry, but I feel blessed. I could be dead by now. I was told I would be, and yet here I sit blathering on about my life in the hopes that my words will someday connect with my son and, for now, to others who may be interested.

Even knowing all this, I’ve found I can still be surprised and flattened by the reality of my situation. My illness continues to teach me something all the time.

My kid waiting to go to the mountains. Let’s go people! The wait is killing me!

For the holidays I planned a trip to Mammoth for my family (visiting parents included). I can’t ski anymore but Sean and Loch love it so it seemed like a special way to spend Thanksgiving. I pictured my boys happily shushing down the slopes while my parents and I reconnected roaming around the village, reading by the fire, and relaxing in the sun and snow. I planned the trip six months ago. I found a lovely three bedroom cabin, booked lessons and rentals for Loch and planned out the meals with my mom. The day before Thanksgiving my whole family piled into our car, complete with new roof rack storage bag and Christmas presents, and started our drive to the mountains. As an afterthought we included an R2D2 looking oxygen concentrator just in case I had any trouble with the altitude. I wasn’t particularly concerned. We’ve been to Big Bear quite a few times and I’ve never had a problem, but since Mammoth is 2000 feet higher I thought it would be better to be safe than sorry. Little did I know….

The drive was amazing with straight, open roads and America the beautiful stretched out before us. Mountains, plains and red rocks as far as the eye could see, almost all of it uninhabited. If I didn’t know better I would have guessed we were in Montana or some other Big Sky territory. With about 45 minutes left in our trip we stopped at a fabulous bakery for sandwiches and talked about our plans for the mountains. Then, about a half way into the last leg of or trip, I started to feel off.  It felt as if I was breathing through a snorkel, labored and unnatural. When we arrived at our rental I took my blood oxygen level right away. You want your oxygen saturation levels to be in the 90’s. Preferably the very upper 90’s, around 97-100%. Exercise and exertion will drop your levels temporarily but they always bounce back. I typically fluctuate between 94-98% at rest and drop to 87-89% during “exercise” like walking  (82-85% if I’m feeling crazy and try to walk and talk at the same time) but I always snap right back to the 90’s after I stop moving. Here, in the parking lot of our rental unit I was at 83% at rest and it felt extremely uncomfortable. I sat uselessly in the cold of the outside structure waiting for my family to unload the car. When the car was empty Sean walked me upstairs and, with that minimal exertion, my levels dropped to the 70’s. My snorkel had become a straw and it was truly frightening. Sean worked fast and had me on the oxygen concentrator as soon as he could. It was all I could do to just sit down and regulate.

So there I was, a blob on the couch, tethered to the wall, unable to help or contribute in any way. Conversation was beyond my capacity. Even with oxygen, my levels were still in the 80’s and I felt miserable. In the span of a half hour I became a completely different person, and that person was really sick. As I said before, I knew I was sick, I just didn’t know I was this sick and the altitude cleared that right up for me. At one point I got up to put on warmer clothes. As I walked to the bedroom my head whipped back twice as my oxygen tube got stuck  first on the fooseball table and then again on the doorknob to my room. It was infuriating and depressing. In frustration I ripped  the cannula out of my nose and changed without it, but when I started to feel lightheaded I found my oxygen levels had dropped to a dangerous 69%. I was dizzy and nauseous but mostly I was really scared.

Mind over matter right? I’d planned this trip. We’d driven seven hours to get here. I’d booked three full days of non-refundable lessons. We’d prepaid our unit. Everyone was counting on it. No matter how terrible I felt I had to man up. I just had to adjust.

But I couldn’t adjust. As the night continued I felt worse and worse. The oxygen concentrator kept my immobile body at 90-91% but it was terrible. The slightest movement dropped my levels exponentially and I felt trapped, like I was confined to a box unable to move. I tried to join everyone for dinner and catching a glimpse of myself in the dining room mirror, I saw a person I didn’t recognize. An ashen faced girl with a tube attached to her face. There was no way I could eat. At the very least, chewing limited my ability to breathe. Eventually I gave up and moved back to the sofa. I texted my doctor and his advice was clear. Leave. Go home. You shouldn’t be there. He said he would try and find someone to get me a portable oxygen concentrator but it would be difficult seeing it was a holiday. I told him even if I got one it wouldn’t be useful. The slightest movement made me light headed. Talking was a struggle. I certainly wasn’t walking around the village or going out for dinner any time soon.

I struggled with what I should do. I felt responsible for everyone’s good time. I’d planned this trip after all and we’d waste so much money if we bailed. I didn’t want to disappoint Loch or my parents and I wasn’t even sure what we’d do for five days with no plan back in LA. But when Sean asked me what I wanted to do, I couldn’t help myself, self preservation usurped socialization and I burst into tears. I told him I had to leave, I wanted to go home. That I couldn’t take it. It felt like I was dying and it was torture. I knew my choice would ruin it for everyone but as far as I could see there was no choice. I was physically forced to put my needs above everyone else’s and I couldn’t second guess it.

Cannula nosed Mommy looking at new lego castle with her very excited (and slightly nervous) little man.

To everyone’s credit, no one made me feel bad about my decision. In full support and without a hint of complaint, everything that had been unpacked was repacked and loaded into the car. I spent the night dozing on the sofa, too afraid to lie down flat to sleep and Sean lay on the floor by my head. He could have slept on the other sofa but he said it felt too far away. He wanted to be close if I needed him. Loch was disappointed but rallied as best as a 5-year old can. Opening all his Christmas presents from my parents helped.

After breathing, Lochlan’s reaction to the situation was my biggest concern. I knew he’d get over the disappointment of not skiing, but this was the first time he’d really witnessed how sick I was and I could tell it was scaring him. At one point he came over and quietly said, “I look at you and I think you can die from this. Can you die from this?” I said, “I hope not baby.” Then he said, “If you die I’ll just cry and cry.” I said, “I’ll cry too baby.” He looked confused and responded, “How can you cry? You’ll be dead.” I said, “I’ll be crying in heaven because I’ll miss you so much.” The whole conversation took less than a minute and it almost killed me. He was so sweet and understanding but I could see the hints of confusion and fear on the periphery. I told Sean I was afraid Loch would either start to see me as a burden, someone who’s illness ruins his good time, or shut me out as a form of self protection, in hopes of making my leaving him in the future less painful. Either way it broke my heart.

Loch only got to play in the snow the first night. He made, very appropriately, an angel.

At one point Loch woke up crying and it roused me from sleep. I went to his room but Sean, already there, silently encouraged me out of the room. Later he told me he was trying to help me, to let me know he had it under control and I shouldn’t worry, but what I felt in that moment was that Loch didn’t want me. That he was crying because I’d disappointed him and Sean was attempting to protect me from the hurtful things he was saying. Lying on the sofa listening to my child cry was devastating. His sobs made me feel helpless and crushed. I imagined this must be what it feels like to die and leave your children behind. To be an angel in the room watching someone else comforting them but unable to help because you’re gone and also the cause. I fell asleep crying for what might be.

As we drove down the mountain the next day I apologized for ruining the trip, but I wasn’t sorry we were leaving. About 2000 feet down, it was as if my power had been turned back on. The straw was gone and I could finally breath normally. The lower we travelled the better I felt and by the last 3 hours you could almost forget I’d been sick at all.

On our way back down we stopped again for sandwiches. I look a little worse for wear but it was just a relief to be able to breathe on my own.

I thought I knew how lucky I was. I thought it was enough to conceptualize how much worse I could be. But until I felt it so clearly in my own body I didn’t truly understand. I might be looking at a future without mountains or cities at altitude, but at least I’m still able to hope for a future. The whole hideous process was a reminder of how wonderful my life is. How much I have to lose and how, despite all my awareness, I can still be reminded of how much I take for granted. It also showed me that there are times in life when we have to put ourselves first, not out of selfishness, but out of self preservation and there’s no shame in it. It’s hard to admit weakness and ask for help, but you have to respect yourself enough to protect yourself, and you don’t have to be sick to do it.

I am thankful for a lot of things: my wonderful husband who’s there to protect me even though he can’t fix me, my darling son who’s heart I will do everything in my power not to break, my parents who’s company I still crave despite the fact we’re all adults and have our own way of doing things, but most of all, I’m thankful for the fact that I’m still here, as me – not some sad, sick version of myself. My life is blessed. I’m angry and scared as hell but I’m lucky. If this weekend was a wake up call, I heard it and I’ll do my  best to appreciate it for all it’s worth.

Love and blessings to you and yours for health and happiness.

God bless,

xo leigh

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