update of sorts

It has been a while since I have written a more serious update, but first, I want to acknowledge the incredible and overwhelming generosity of our loved ones, dear online friends, and perfect strangers. "Toonies for Transplant" was a wonderful success. We will forever be grateful for your contributions to our lung fund during this difficult time. We can truly take a deep breath. Our fundraising goal has been met! (The fundraising page has been re-formatted. Our media has been lost. We are hoping to get it back in a few days).

James appears to be stable at 12% lung function, but it is difficult to ascertain a level of stability that also allows for the unpredictable nature of the disease. We recognize that everything can change in a single moment. We are always alert to the possibility of decline. It is a relative stability that doesn't allow for complete rest and relaxation. We remain aware, in both fear and gratitude, making the most out of each and every moment (all within the limitations of the disease). Laughter has never been more important.

James is doing exceptionally well at the Transplant Gym. He is building strength and endurance. James accepts the limitations on his independence. He is learning to slow down and listen to his body (with its ever-changing capabilities). He is able to exercise for five to seven minutes before a sense of complete breathlessness forces him to rest. This no longer incites a form of panic or anxiety within him. James has come to expect these moments, and focuses on breathing through them. He accepts a lower level of intensity for exercise and allows for these breaks to rest. I am so proud of his determination. This is a recurrent theme in my posts: James as the epitome of strength and courage. I feel an incredible gratitude for being part of his life.

I return to another recurrent theme in my posts: That is, a level of physical and emotional exhaustion that is beyond description, and the limitations of language for the expression of these experiences. There is a heaviness that seems to have long settled into my body. It has become a constant weight that slows my thoughts and movements to an impossible pace. I am made still by the force of this exhaustion. The adrenaline of on-going crisis is a temporary illusion. I find it difficult to regenerate energy.

It takes a conscious effort to face the fatigue with self-care. I seek the comfort and nourishment of foods. I exercise to escape my mind and build my own strength. I sleep, and I sleep, and I sleep. I also build energy through attitude. It involves a letting go, or rather, an acceptance for everything that is beyond my control. I must embrace the moment for survival and in mindful appreciation.

My love for James is my best defense against exhaustion and fatigue. It is our best defense. We are both very sensitive to one another. We have the ability to lift spirits (and of course, the alternative, bring each other down). The later is rare. We both feel positive for the most part. We have each other, don't we? That alone makes every single moment worth it.

an update of sorts

I have to remind myself to keep writing. I've been exhausted, and sick, and it is hard to find the energy to do more than hide under the covers. The insanity and chaos (that is my life) continues. I will spare the details, but it really has been a crazy few weeks between holidays, illness, appointments, accidents, school assignments, and of course, a stolen wallet and broken computer. 

Stress seems to compound on itself (and create a false impression of exponential growth in magnitude). I continue to cope, because, well, I have to. I go through the motions. I focus on that which is is within my control (or in the least, provides the illusion of control). I remind myself of the importance of taking strides from one moment to the next.

I have also been cleaning and baking, and cleaning and baking, and cleaning and baking. James will be back on Thursday, and it feels wonderful to (finally) be preparing to share my space with him. I have not written (or talked) about the loneliness: I really do need him. (He helps me self-regulate). It hurts to love someone this much. It hurts to miss someone this much. The time did not go by fast, and I'm scared to let him go again.

I wrote (briefly) about gratitude a few posts back. It seemed incomplete at the time (as it always is), but there was something in particular I wanted to re-visit: my gratitude for tissue and organ donation, and by extension, for James' organ donor and family). I never imagined I would become so passionate about tissue and organ donation.  I still don't have the words to express or articulate the extent of my gratitude. (I cannot even begin). Organ donation is an incredible act of generosity.  It is more than a "gift" of life, or a "second chance" at life for single person. Our dreams for the future have become a possibility for James, and through James, for his family, and friends, and all of his loved ones. I am forever grateful to and for James' organ donor and family.

[On a not-so-aside: there was an important article in the newspaper this past week about dispelling the myths regarding religion and organ donation. This is a topic I would like to explore further in a future post. Specifically, I am interested in the conflict between death and/or burial rituals and traditions (halachot), and the obligation (or mitzvah) to preserve and/or save a life (pikuach nefesh). See: "Religious Leaders . . . " ].

Signing out for now. There is food to be eaten, chores to be done, and cats to be cuddled (and cuddled and cuddled).