Through Facebook, Kirsten Tynan tells the story of Steven Phillips, a man standing between his wife and her death.
Taking care of the person who means the most to you in the world when you are the only one between her and death starts to become too much to ignore any longer.
I recently read Dan Griffith’s article The Demise of the Guise of Guys discussing, among many things, men’s experiences with intimacy and social isolation. Elsewhere, I have also been following one of the most intimate glimpses I’ve had into another person’s life.
Steven Phillips is a good man and a good husband. His wife Rachel is amazing in her own right, but I want to focus mainly on Steven’s story here. He is, for me, a living example of how strength goes hand-in-hand with vulnerability, trust, and authenticity. I invite you to read on to see what I mean. These passages are condensed from Steven’s Facebook notes. Know that what you read here barely scratches the surface.
Due to a genetic condition, Steven’s wife must have a biosynthetic trachea transplant, an experimental procedure that is neither covered by insurance nor can be performed legally in the United States. Emotionally stretched to the limit and financially devastated, Rachel and Steven now face the daunting challenge and enormous cost of the only possible life-saving therapy for Rachel. Many have come together on Rachel’s behalf, as hopefully many more people will. But more than anyone, it is Steven who stands between Rachel and death.
July 4, 2011
I took Rachel to see the fireworks last night. The park that overlooks Lake Champlain is a block and a half from our apartment. That much was a blessing as 20,000 people go to this every year. We had a spectacular view from the cliffs over the lake.
Rachel didn’t do so well in the end. She took a big tank of oxygen to make sure it would last through the event. When the show was over, she could hardly walk, and we were stuck in a crowd of 20,000 people. To make matters worse, the oxygen had run out! We inched our way back to the apartment. If we had needed an ambulance, it would have been chaos for them to get through such a crowd.
People say, “Just take things one day at a time.” For us, it is often one minute at a time. All we know to do is just to take the next step that lies in front of us. Fortunately, we always find God standing right there when our foot reaches the next step… each time, just the provision we need… just the amount of assurance to continue on or to wait a moment and take another breath.
Try this with me. Take a breath.
Now… skip the next 9 breaths you would normally take! Hold that one breath for sixty seconds. Notice how light-headed you begin to feel, how shaky, how disoriented. Your lungs begun to burn for more oxygen, and you just can’t wait for that next refreshing breath!
You are now living on a comparable amount of oxygen to what Rachel is.
Out here, the next step, the next breath, is a miracle of such wonder and grace. We wait here… waiting upon God… waiting for the pieces to fall into place… a transplant in Sweden that seems like a science fiction novel… a creative miracle… we don’t know. We only know that God is with us right here on this step we stand upon today… this minute… this breath.
Here’s to my amazing wife, Rachel… the strongest and bravest person I know.
July 14, 2011
I had to respond to a question someone asked me tonight and a good a friend of mine was here so I let him read my reply. He asked me to post this after he read it because he felt it was important for me to communicate it. I argued with him, but he said, “Steven, those people who want to help you will appreciate you sharing your heart and your needs even if it is embarrassing for you to do so again… and those who don’t will not pay it any attention anyway.” AGH!!! I just know we are facing the biggest “mountain” we have had to climb yet! I feel like some whining little boy!!! AGH!!! I wish there was some way for me to strike out against something. A very macho/alpha/male response, I know… but how do I “punch out” at a disease?
Here goes… again…
Our church is setting up a fund to receive donations for this purpose. People can donate to it at Organic Church Community; 70 South Winooski Ave. #197; Burlington, VT 05401, or online through PayPal using the email address email@example.com. People need to note on their donations that the purpose is to help with Rachel’s expenses, and we will send a receipt at tax time.
I now understand why “humble” is a root part of the word “humiliated”. I feel like such a beggar. I think sometimes, “God, I can’t send out another update saying our problems are overwhelming us!” He says nothing in reply to that. I think He wants to do something deeper in me, and in those who stand with us, than I can understand on this side of heaven. I just know He has made us a broken vessel. All we can do is wait for the Great Potter to mend us. WAITING is the hardest thing I have ever done!
July 15, 2011
Rachel is in ICU. She will be sedated all night and she is intubated on a ventilator into her airways for her to breathe. They can’t bring her off sedation because every time they have tried, the coughing has resumed. Dr. Wiess told me they will try again tomorrow, but he said if they can’t do it any other way, they will keep her intubated until Dr. Macchiarini comes on the 25th.
They asked me not to try and stay overnight at the hospital because they said she would not be awake at all and I have to look after Siena [Rachel's service dog] the whole time. They were very understanding about her and let her right along bedside in ICU. Siena really got worried when she licked Rachel’s hand and there was no response. Anyway, I’m only one mile away, and they said I could come back anytime in the night if I wake up and want to come back to see her.
This is a hard time. I couldn’t sleep last night because I was trying to imagine any kind of life without Rachel. I know everyone faces that some day… but not everyone faces it with a wife of only 34 years old. This will be the hardest night I’ve ever had yet. I’m holding on, Lord. Now You have to hold on to Rachel!
July 23, 2011
When you are caught in a serious medical problem, you find yourself somehow strangely detached from it at the same time. You do this to try to protect your inner core from the fear, the sense of helplessness, and the worry that “this could be it” that nags at your mind.
Then all of a sudden, the time for making choices that will affect the rest of your life is upon you. One day is all we have left before that day is upon us. We think, “You should be feeling something, doing something… anything.” All we can do is let the minutes tick by and wait. It’s like the calm before a tornado, eerie and hushed. Are we doing the right thing? What else can we do? Have we done everything we should have done? Oh God! Hear my lonely, trembling cry. I believe… help me with my unbelief. Why is it so quiet?
Is this how Jesus felt that night in the garden?
No answers… only loving friends waiting with us.
July 31, 2011
I walked down to the park overlooking Lake Champlain this morning. Beautiful! I took Siena with me because she needs a life also. She can’t be a service dog all the time. By the time she does her “morning stuff”, we run into a couple visiting Burlington for the weekend. They watch us for several minutes before they come up and ask about the “the amazing dog” they have been talking about.
A few minutes more and they know about her “service dog” abilities. She can tell every time Rachel’s oxygen level drops below 95% and comes to warn us. “Wow, I’ve heard about dogs like that before but I’ve never really met one before. I work with kids with pulmonary issues. What’s the medical condition affecting your wife?” Fifteen minutes more and they are almost in tears. “We’ll keep her in our prayers,” they say as we part company. This happens at least a dozen times every day.
Siena and I try to get five minutes to ourselves where she is just a dog and I am just a guy in the early morning mist. But a nagging feeling starts to niggle at my thoughts. I didn’t check Rachel before I left with Siena this morning. I am only a block and a half away, but the thoughts start to increase in intensity. Was she breathing? Was her oxygen all right? What kind of a husband are you, Steven? You didn’t even bother to check her color before you left. I’ve been gone less than a half-hour, but the pressure of taking care of the person who means the most to you in the world when you are the only one between her and death starts to become too much to ignore any longer.
Siena and I start home at a quicker pace than we used to head out this morning. I have to make sure she is OK. On Thursday, Paolo [Dr. Macchiarini] said, “Your job, Rachel, is to make sure you stay alive to October. You have to do whatever that takes to make sure you do!” Those words awaken me every night. These thoughts are every day of our life. I never have fifteen minutes without these concerns coming in. I never wake at night without listening, very quietly, to see if she is still breathing. This is “life” as it is today… and everyday. This is why I write you guys so often. Without the chance to get some of this stuff off my chest… I think I’d go mad. Thank you for caring enough to listen.
August 15, 2011
I know many of you are praying for Rachel. Just know that her airways collapsed SEVEN times this weekend alone. Seven times I had to pause and hold my breath to see if she would be able to get them to open again or run for the car to make a flying trip to the emergency room.
We are now talking with our doctors about trying to raise the money to just go to Sweden and have the surgery because each one of these events is now life threatening. To date, we have raised about $3000, for which we are truly thankful. That represents only about 1% of what we will need… but it is a start… and God is BIG.
Please keep us in prayer. We have some tough decisions to make soon. It’s nerve-racking to “camp” this close to the “fault line” of an earthquake. Pray for endurance and sanity.
This story continues to unfold in Steven’s Facebook Notes, which you can read if you are logged into Facebook, and on Steven’s and Rachel’s blog Breathing Companions. I also want to mention that in addition to the information on how to make a tax-deductible contribution in the July 14 passage above, through the end of August I am offering my self-esteem, disarming good looks, and dignity at a rock bottom price to help out. See the challenge in the sidebar on the website Rachel Reinspired.
—Photo Perfecto Insecto/Flickr