On Separation and the Breaking of a Heart

Woman on BeachWhen you love someone, so deeply that it affected the core of your soul, there are no words to describe what it’s like being torn between being there for them in their time of need and taking care of other responsibilities that just can’t be put off any longer. Your heart aches as you part ways – knowing they will need to face this part of the journey alone. The tears get caught in your throat as you yearn to find the right words to comfort them over the miles… the words that would normally be easily found in a simple holding of hands.

I’m trying not to cry but the tears have other plans.

My husband just left for a 1.5-hour trip to his transplant hospital. There he will go through blood tests, chest x-rays, the 6-minute walk and pulmonary function tests (PFTs). He will be asked, over and over again, about the new pain in his lower left lung, the deep choking cough that won’t go away, the low-grade fevers that visit him daily, and the overall lung function (spirometry) numbers that keep declining.

And then… they will admit him to the hospital.

And, for the first time in 14 years (since we’ve been married), I will not by his side.

And it’s killing me.

For the first time, I couldn’t rearrange my schedule to work from the hospital. There were no more opportunities for me to reschedule my clients to be by his side.

You see, almost a year ago my husband was diagnosed with Stage 4 Post Transplant Lymphoma Disorder (PTLD) – lymphoma cancer caused by his immunosuppressant transplant lungs. His body had tumors everywhere and he was put on 6 months of chemotherapy. After 8 months, he was declared to be in remission but the chemotherapy did a number on his body. His white and red blood cells still haven’t bounced back and he’s been nutropenic (think “bubble boy”) ever since.

My business took a backseat to my husband’s care. I hardly saw any clients and worked when I could from hospitals, chemo rooms, and my own bed. Whatever it took, I was there for my husband. He came first.

But then all the medical bills started to come in. We didn’t have the best insurance but it was always good enough to handle his 13+ prescriptions for the transplant stuff. This time though, he was in and out of the local hospital every 2-3 weeks. The bills went from a trickle to a landslide.

So, here we were. My income slowed because I needed to be there for him and he wasn’t going to work so there was no income from him.

Our well-stocked emergency fund vanished and more bills started to come in.

We thought everything was going to be all right when he was told he could return to work, but we were wrong.

Even though he worked, the company he worked for decided not to pay their employees – waiting for a “project to come in”. Before they laid him off, he was without more than 2 months worth of pay – more than 2 months of absolutely no income from him to help pay for any bills.

Yes, he was laid off and, at least now, he has a bit of money coming in from unemployment.

Even though we live a VERY frugal lifestyle, that’s not nearly enough to cover mandatory expenses along with his medications, back medical bills, and now this trip for yet another stay at the hospital.

I just can’t do it anymore.

We need the money to pay our bills so I can no longer push off my own work to be where I want to be – by his side.

There’s no more emergency fund. There’s no more cutting out expenses. There’s no more work flexibility.

If I don’t let go of his hand this time, there will be no house for him to return home to.

And it breaks my heart.

I will put on a smile today, do my job, and be a friend to all… but my heart and head will be with him… until I am able to hold his hand once again…

After her husband received a double-lung (bilateral) transplant in 2004, Shannon founded the Angel Cove Organ Donation Awareness Shop, which provides awareness t-shirts and gifts products for transplant recipients, living organ donors and donor families - giving 100% of the profits to help heart and lung transplant recipients with medical costs. Shannon lives in Milwaukee, Wisconsin with her wonderful husband and two chocolate Labrador Retrievers.

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